Nora had an ENT appointment on Friday, and as soon as we got into the exam room, she started pointing to the door, wanting to leave. This was the first time she had done that. I wondered when she would start dreading the Dr:-/ She was happy to stay once I let her play in the water-she loves to clap her hands under a running faucet:) 
The drain had not been draining as much the past few days, so we decided to take it out. It is sooooooo nice to have that out. Nora also had most of the stitches removed. The Dr left 5 stitches in because the incision still isn't looking great. The right side of her face is still warm and red and firm, so she did an ultrasound to check for pockets of saliva. It showed two, but instead of draining them right away, we are going to wait to see if they'll reabsorb by themselves. Nora was pretty upset after the drain and stitch removal, so we thought we'd give her a break. I let her play in the water again afterward, which put a smile back on her face:) 
Nora seems to be feeling fine. She has endless energy, which I think she siphons from me;-) She is still not eating much/anything by mouth, and we have had to really slow down the rate of her tube feedings so she doesn't throw up after each one. Lina and Belle never threw up when they were babies, so I guess Nora is just making up for that! I think she's gone a little overboard. At least it's not projectile like when she was real little. Although that was kind of nice, because sometimes it wouldn't get on her clothes, so at least I wouldn't have to clean her AND the couch/carpet/everything within four feet. But enough about puke.

This crazy little bag lady loves to wear hats and take off her pants

We will go in again next week to remove the rest of the stitches and hopefully she won't need anything drained. Please pray that her incision would heal and that whatever is causing the issues on her face would be resolved! And as always, please pray that she would stay healthy:)
For those of you that may not have seen/heard about it on Facebook, my sweet friend Abby is doing a T-shirt fundraiser for Nora. If you're interested in purchasing a shirt to support Nora, check out this link
https://www.booster.com/nora-fundraiser
(Many of you have asked if it is ok to share the link-you are always welcome to share anything I post. We appreciate you spreading awareness and recruiting more prayer warriors:)
And as I already said on FB-Nora is so lucky to be loved by so many.  We are so grateful to all of you that have helped lighten the load of this journey and have made Nora's surgeries in NYC possible! We are overwhelmed and humbled by your generosity. We thank God for His provision and pray His blessings on you as well!
Hope you all have a wonderful weekend!!

surgery updates (warning: it's a long one)

Nora likes to put her blankie over her face and then gently tap it-that makes everything OK;)

I've said it before, and I just feel the need to mention it again...if you read something and you think to yourself, "that is not right" it probably isn't.  So please feel free to correct me!  Especially other LM moms-you probably know what I am trying to say and can explain it much better.  I only pretend to know what I'm talking about;-)

Also, this is a rambling warning-I don't have time to go back over it all, and if I don't post it now, it'll be another month before I do;-)

Also, I made a Facebook page for Nora to hopefully make it a little easier for people I am not 'friends' with on FB to follow Nora's progress ( https://www.facebook.com/noraslittlelight ) So I think you'll get a notification when there's an update?  I'll keep the blog because there are some family and friends that aren't on FB.

For those of you I'm friends with on facebook, some of this is old news...

We made it to NY without any issues. Evan came with this time since it was a bigger surgery.  Nora loved having her daddy all to herself:) 

Nora's surgery took a little over 6 hours, and the doctor was very happy with how it went! I wish I could tape everything the Dr says, because I always think I'm going to remember everything, and be able to regurgitate it in a way that makes sense, but that is usually not the case. In a nut shell, it was a very difficult surgery with risk of nerve damage, but it was very evident that God was guiding the Drs hands and protecting sweet Nora.  The Dr said that none of the nerves had been touched, and when he checked them on the monitoring machine, it showed that they were at full strength. That's what I like to hear!  She does have one area of her mouth on the right side that doesn't move like it did before the first surgery.  I haven't asked about it yet, partly because I am a little afraid of the answer.  The Dr had said that it can take over a year to regain complete function, so I am praying that is the case.  

But back to the recent surgery...they removed part of the parotid gland in her right cheek, along with over a centimeter thick of diseased tissue (the lymphatic malformation is all intertwined with the tissue).  The tissue that is left still contains disease, but if he removed it all, the skin would just rest on bone.  So she will have some sclerotherapy to hopefully scar the cysts and keep them from being able to inflate/flare up.  The Dr also checked her airway while she was under and was very happy with how that looks.  He thinks she only needs a few more airway surgeries before getting the trach out!! It was so great hearing him talk after the surgery, I love good news and when doctors are happy:)  It is so evident that God is working in Nora's little body and using this surgeon to heal her.  We are so grateful that we are able to travel to NY and work with this surgeon and his team.  

The part that looks like a 'U' on her cheek is the drain inside.  It comes out in back of her ear. It's kind of hard to see, but that long tube drains into a bulb that is emptied several times a day

It took Nora longer than usual to wake up after surgery.  She had lost a good amount of blood, so they were debating giving her a blood transfusion. Her numbers were right on the edge-they said if she didn't get one, her numbers would improve, but if she did get one, they'd improve faster. They went back and forth for a day and eventually decided against it. Nora was still needing oxygen the day after the surgery (she is not usually on it at all) So they did a chest x-ray that showed what looked like a small air leak, which could have happened during surgery.  They said that it wasn't a huge deal right then, but if it got worse, she would need to be transferred to a different hospital.  That made me nervous. If you haven't been to NYC, picture a million one way streets with cars parked on both sides, and bumper to bumper traffic.  When we were walking to the hospital the day before, we saw an ambulance stuck behind a garbage truck that was stuck behind a car with it's trunk open and no driver in sight.  I hope the person in the ambulance wasn't seriously injured! I decided that if Nora needed to be transferred, I'd just throw her in the stroller and take her myself;) But thanks to the prayers of many, Nora improved and her x-ray the next morning looked great:)  

Nora was definitely grumpier after this surgery.  The only time she was happy was when she would FaceTime with her big sisters-she'd just keep hugging and kissing the phone-it was adorable.  I love my little sweeties:) Nora slept a lot and just wanted to be held when she was awake.  It was a good week before she was back to her smiley self.  I can't imagine what that feels like-having your face sliced open and folded over for 6+ hours while they scraped away at it, and then walking around with a surgical drain hanging out the side of your neck! Poor sweet baby-she's been through more than most people will go through in a lifetime.  But I know God will use it all for good. 

Evan left the Sunday after the surgery, and my mom came the Tuesday after.  Thursday we went to have the stitches removed.  I was going to count them but forgot. I'd guess 60-70? It was definitely less than the first surgery.  They used the same incision as last time-it starts at her right ear but this time only went to the middle of the underside of her chin.  Poor Nora-the stitch removal was pretty traumatic.  Last time she was much smaller and easier to hold down.  We had all worked up a good sweat by the time it was done!  About halfway through, Nora wriggled her arm loose and brought her blankie up to her face like she does, and then was calm.  We let her keep it like that, and she let us take out the rest with no problem. I felt so bad-if I would have known that would have helped, I would have let her from the start!  I will remember that for next time.  

I had to put this picture up because it just makes me laugh-Nora was not impressed with Miss USA (She was very sweet, and Nora warmed up to her after some coloring, and playing with her crown:) The RMH is so great about having activities for the families

Our flight home was uneventful-it was so nice to get home! We were gone for 10 days this time.  It's a little harder to get back into life with the longer trips, but I am so thankful that we get to come home!  Many families that we meet at the Ronald McDonald House have to stay there for months at a time.  Staying at the RMH definitely helps keep things in perspective. 

Nora was doing really well after we got home. Then I noticed that her cheek was warm and red where the drain was on the inside.  I called about it, and they said as long as she didn't have a fever, it was fine.  This past Saturday, she woke up from her nap feeling a little warm.  I took her temp and my heart sank as I saw the numbers climbing.  It was only 101.1-normally, I wouldn't take her in for that, but because of everything else, I told Evan I was going to take her to the ER (because of course it started on a weekend!:)  When he was kissing her goodbye, he noticed that there was swelling on her neck around the entrance of the drain.  The redness and swelling started spreading before our eyes, so I grabbed her stuff and headed out.  By the time we got to the hospital, her temp was over 103 and the right side of her face and underneath her chin were bright red and swollen at least an inch out.  

They admitted her and started her on two strong IV antibiotics.  It took a while to control her fever, because she kept throwing up, but eventually, it came down.  The drain was infected and she also had tracheitis (an infection in her trach). I feel like there was something else...maybe it was just that they were worried about her heart rate being so high and thought she may develop a blood infection? (she didn't:)  They ended up having to re-open her incision about three inches and replace the surgical drain inside her cheek.  While they were in there, they cleaned everything and drained pockets of saliva that were causing some of the swelling.  They also Botoxed the spit gland...this is where I really just don't know...something about the partial removal of the parotid gland from the initial surgery causing saliva to leak? Maybe? It all makes sense when they explain it, and I think I understand, but when I try to explain it, I sound like Mr. Bean.  Any way-the botox will help dry up/control the secretions and hopefully prevent it from causing future issues.  I was nervous about Nora being opened up again, because of possible nerve damaged.  But Dr Waner (in NYC) gave me his cell number so Nora's ENT here could call him about where he left the nerves. Together, they decided on a game plan.  I'm so thankful that Nora's ENT was the ENT on call over the weekend-God is so good!  She knows Nora so well and I trust her completely. She has done such a great job with Nora.  We are so grateful to have such amazing medical care.  

Nora loves her daddy (and her crown;)

After 4 days, they were happy with how Nora was progressing and were comfortable sending her home.  When I picked up the bag of meds from the pharmacy, I couldn't believe how heavy it was.  I weighed it when we got home-5 pounds! That's 25% of her weight!! Two of the meds are every 6 hours and one is every 8 hours. And I'm supposed to strip the drain every 2 hours (during the night I only do it the two times I'm up to give the med).  The swelling seems to be improving a little each day.  Normally they put her on steroids for swelling, which takes care of it pretty fast.  But Nora had just ended a two week course of steroids a few days before this all started (she is always on them after surgery) and since she's been on them so much, they want to try to avoid it, if possible.  The Dr said that she had a hard time stitching Nora up because the flesh was in such bad shape-which I guess is caused by the steroids?  And from being opened up so much?  Whatever the case, we are praying the meds shes taking will do the trick.  We saw the Dr yesterday and she was happy with how Nora is looking, so we will keep doing what we are doing.  

A huge Thank You to all of you that have been praying for Nora.   We are so encouraged to know so many are lifting her up, all over the world!  It was kind of scary for a bit, but we felt a peace knowing that God was taking care of everything. While Nora was in surgery, I read Psalm 139. Verses 13-16 were especially comforting to me, "You knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.  My frame was not hidden from you when I was made in the secret place, when I was woven together in the depths of the earth.  Your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be"  Nora is fearfully and wonderfully made, and because God has all her days planned out, there is nothing for me to worry about.   I may not understand the 'why' of everything, but I know it will be used for good.  Thank you for coming along side Nora and our family as we continue on this journey!  I don't know what we'd do without you!! Please pray for continued healing and protection from any more infection/issues, and also for wisdom for the doctors as they make decisions regarding her care. Her heart rate was a little higher last night which can sometimes mean trouble-please pray she stays healthy!!

Despite the recent excitement, Nora is doing great!  She was pretty miserable for a couple days, but she is back to running around and tackling us with slobber kisses:) She loves being outside now that the weather is nice.  When Lina and Belle are outside without her, she stands at the door looking out longingly. The girls will come to the window and make kissy faces and then run off, leaving Nora jabbering away at them. I love hearing her "talk".  She's added a few new words to her vocab and a lot of signs.  Oh, she is such a sweetie.  She is so funny.  She does this thing where she shrugs her shoulders up by her ears, looks at you with a big smile and squinty/mischievous eyes, then puts her fists up and squeezes her muscles while laughing-she thinks she is just hilarious, and so do her sisters.  She has them rolling on the floor laughing with her antics (although I have to say, they're pretty easily amused;-)  

If you've kept reading this far- I'm sorry for writing a short novel;-) But seriously, thank you for taking an interest in Nora's story and for your prayers.  I can't say it enough-we are so grateful for all of you. God bless!

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

Home again

Nora and Grandma at the NY Public Library

We had a nice, quick trip. We made it to NY on Tuesday with no problems (besides Nora wetting through her diaper on the way to the airport;-)  As always, Nora did great, and slept the whole flight. When we got to the Ronald McDonald house, we saw Mario and his parents (Mario is a 17 year old with Lymphatic malformation similar to Nora's) They were on their way back to Switzerland, but we were able to chat for a little bit.  It's nice to see familiar faces:) 

Nora waving to her adoring fans

Wednesday morning we walked to the hospital and got all checked in.  Nora charmed the nurses and everyone around with her waves and kisses and adorable smiles:)  I took her back to the operating room and held her until she was put under-I love that I am able to go back with her and comfort her until she is out. It was a quick procedure-I think she was only gone for maybe an hour and a half? The Dr said he was happy with how Nora's airway had responded to the last procedure.  He did some laser work in her airway this time (last time he did bleomycin injections). Nora was more groggy than usual coming out of anesthesia, which was kind of nice. She usually wants to climb all over and makes it a challenge to keep all the IVs, wires and tubes from being pulled out! We spent one night in the hospital for observation. The nurses there are great-Nora had them wrapped around her little finger:) 

Nora loved taking the nurses on walks

While we were in the hospital, we met another little boy, Ostin, who also has a lymphatic malformation.  Each trip we have met a new family with the same condition-it's so nice to meet people who are going through similar experiences. Ostin and his mom are from Honduras and spoke only Spanish.  We were able to communicate with them through Tom and Emily, their sponsor family. Tom is a pediatrician, and together with Emily, they help kids in Honduras receive medical care.  Emily has a blog about their work in Honduras (You can see some pics of Ostin there)  http://esperanzahftc.com/ 

Nora bounced back from the procedure quickly.  The doctor did have some concerns about her heart rate going too low overnight, but everything else looked good, so we were able to leave the hospital on Thursday.  Friday Nora had a quick check up, and we discussed the next surgery. We scheduled a de-bulking surgery for the right side of her face in early May. That will be a major surgery-you could start praying for that one now! We flew home on Saturday and got in 30 minutes early! Unfortunately, it was a full flight so we weren't able to bring Nora's car seat on board (we don't buy a ticket for her since she is under two, but all the other times, there has been enough room for it)  So Nora did not sleep during that flight, but she played nicely on the floor by our feet, and had a grand time playing with the seat back pockets and the barf bags;-) I'm so glad my mom was there to help-thank you for everything mom!! And thank you to all the wonderful people that took care of Lina and Belle while I was gone!

Nora's little play area on the flight home 

Nora's been doing ok since being home.  She is on a steroid (to help reduce swelling from the laser treatments) which makes her a little cranky and messes with her sleep schedule.  Her heart rate has continued to go too low during the night, which causes her monitor to scream at me all night long.  When it alarms, it startles her and her heart rate goes back up for a bit, but it has been hovering around 60 for a good portion of each night, which is not great.  We spent most of the day on Monday at Children's hospital trying to figure things out.  They had us go to the ER since Nora is not currently being followed by a cardiologist, and the tests done there came back fine. There have been times in the past that her heart rate has been lower while on steroids, but never this low.  She is on a higher dose than she has ever been on, so we are thinking maybe that is causing this new issue?  She started tapering off of the steroids today, and will be done in a week and a half. We have an appointment with cardiology next Friday, but I am trying to see if we can get in earlier. We would really appreciate prayer for this.  I'm not extremely worried, since is acting normal while she is awake, but I would like it to be resolved as quick as possible.  And I would like to sleep again! Until I do, I'm thankful for the truth of Isaiah 40:29-31

"He gives strength to the weary and increases the power of the weak.

Even youths grow tired and weary, and young men stumble and fall;

but those who hope in the Lord will renew their strength

They will soar on wings like eagles; 

they will run and not grow weary, 

they will walk and not be faint."

Thank you for all your love and prayers-we are so thankful for all of you!

tomorrow

I don't have time to write, but I just wanted to ask for prayer for our travels to NY tomorrow morning (Tuesday).  Nora will be having another airway procedure on Wednesday morning-please pray things go smoothly! I am so grateful that I can send this out and know that so many are praying-we are so grateful!!  I will try to update after the procedure on Wednesday

It's all good

I really did have this written a while ago, but I wanted to add some pictures...which meant getting them off my phone and on to the computer, which meant thinking about it when I actually had time to leave my phone hooked up for a while (because it had been a long time since I uploaded pics and there were a zillion) And then, of course, I have to look at them all...anyway, today I did, and I feel very accomplished;-) It's the little things... 

We did end up making it home that night (the last time I posted) Thank you so much for your prayers!  God worked everything out perfectly. Nora did great on the flight-she is such a good little girl.  She slept the whole time while Angie and I played cribbage:)  Thank you for all your help, Angie!!

Nora has been doing great.  Her tongue stopped bleeding soon after we got home, which was a huge praise!  She has had ear infections and pink eye, but those were easy fixes.  She is healthy-ish at the moment, which we are so thankful for.  She is such a happy little girl!  It has been so great lately with her being healthy.  I have even slept through the night a few times!! I've started trying to catching up on all the things that have taken a back seat for the past 15 months (I can't believe Nora is 15 months!) For a while, if it wasn't life or death, it wasn't getting my attention.  My main focus was keeping my three sweeties alive and happy.  I can't say that they are always happy, but they are all still living, so I count that as a win;-) 

As you can see in the first picture, the right side of Nora's face can get really red when she is sick.  As you can also tell from the pictures, we have to make sure we close the bathroom door!  Don't you love the green and brown toilets?  Perks of buying a foreclosure;-)

Nora is getting so big and doing all kinds of fun things.  She has been making a lot more sounds since the procedure and is becoming a noisy little girl-I love it! She loves waving and blowing kisses and giving hugs-she is such a lover.  I love seeing her tackle her sisters with a big hug and slobber kisses (as Belle calls them:)  Nora always wants to be with Lina and Belle, and they are (usually;) very happy to have her around. They are so cute to watch together.  I love my sweet little girls:)  I could go on and on about them, but I'll spare you;-) I am so thankful I get to be their mommy (although I won't lie-there are definitely days that year-round boarding school sounds very attractive;) 

Nora is a little monkey, just like her sisters:)

Nora was doing really well with eating by mouth, and then decided she didn't want to anymore.  She would eat one or two bites and then refuse any more.  It can be so frustrating, but I have to remind myself that she is doing so much more than we ever thought she would be able to!  God is so good.  We've been working with a speech therapist to help with Nora's oral feeding.  With her help, we realized that the reason Nora stopped eating was because she hated the baby food!  I was afraid to give her pieces of food, but she is eating real food now and loves it.  She still isn't eating a ton, but she is making great progress!   Such a huge praise.  

These two pictures were taken exactly a year apart-what a difference a year has made!

Last week, the ENT did a scope of Nora's airway and it showed improvement! It was such an encouraging appointment-so amazing to see physical proof of God working!  I don't really know what I'm looking at when they're inside, but I could definitely tell it looked better. God is so good!

Belle is great company at Nora's appointments:)

Thank you a million times over to those of you who continue to pray for Nora and our family.  We are so grateful for all your support and encouragement.  We thank God for you all daily!  For those of you asking how to pray, please pray for continued health for Nora (and the rest of the family:) She could also use prayer for her oral feeding and overall development.  She is on track with most things, but there are still some areas where she is behind.  We will be going back to NY at the end of March for another airway procedure.  Please also pray that these surgeries and procedures would continue to go well and be effective.  Thank you!!

"Now to Him who is able to do immeasurably more than all we ask or imagine...to Him be the glory forever and ever!" 

Ephesians 3:20-21

1/24/15

Nora did great on the flight here-she slept for half and then caught up on some reading:)

The procedure went really well on Wednesday, and Nora is recovering well. They worked on the area near her epiglottis, and the doctors were happy with how things went. There is some swelling, which is normal, and her tongue has been bleeding a little bit (but not as bad as it has in the past). I guess that is normal too, and should (hopefully) stop soon.  She still seems uncomfortable at times, but overall, she is pretty happy.  

Because of the bleomycin, Nora couldn't have any adhesives on her skin for 72 hours.  Her IV was held in by gauze wrapped around her arm, so it wasn't a huge surprise when I discovered she had pulled it out during the night. When we got to the recovery area after the surgery, the nurse who was holding her told me that Nora was a very feisty girl and had been trying to crawl out of the bed:)

We are *hopefully* coming home today. Our flight has been cancelled and rescheduled twice because of the weather here. We currently have a later flight into Chicago-please pray that we can get home tonight! Besides the fact that we just want to be home, the Ronald McDonald house doesn't have a room for us tonight, so we'd need to find another place for the night, which would kind of be a pain.  Please pray that everything will work out and that Nora will do well on the flight home.  I'm going to finish packing up the room-thank you for praying!