A little catching up...

Sooooooo, it's been a while since I've updated on here.  I've been posting on Nora's FB page because it's easier for some reason.   I know there are some people that aren't on FB, so eventually I'd like to start this up again, but I just don't have the brain energy at the moment. But I have been thinking about starting up again, because besides keeping friends and family in the loop, I had also wanted to share our experiences with anyone else that might be going through a similar situation.  I know that when we received Nora's diagnosis, I would google "lymphatic malformation" or lymphatic malformation and trach" and every other name for LM.  The medical sites were somewhat helpful, but the blogs of people who are living it were SO much more help.  So anyway, I'm not going to write much of an update right now...

The January surgery was ok.  She ended up having two surgeries that time because the surgical drain malfunctioned. When they went back in a couple days later to replace it, they did a little more work.  Then the surgical drain ended up getting infected, but we caught it right away, so it wasn't too big a deal.  

We were back in NYC for another surgery the end of February. They did a reduction on her lips and some debulking on the inside of her mouth.  It was the worst one for her so far.  It was so sad, she was in so much pain.  The surgical drain also started getting infected after that one.  Drains are my nemesis.  

In April she had steroid injections in her cheek in NYC-we were there for maybe 36 hours!   It was amazing.  

She had some sclerotherapy here in MKE the beginning of July, and we are currently trying to plan the next steps.  

Overall Nora is doing great.  God is so good.  

Thank you to all of you that are praying!

Here is a recent picture of Nora-she is getting so big!! This was at family day for the Army.  She loved playing in the helicopters:)

Upcoming surgery

Happy New Year!

We hope you all had a wonderful Thanksgiving/Christmas/holiday season:) Ours was really nice.  Nora was pretty excited about opening presents this year, which was really fun and cute to watch. Her favorite gift was Mr Potato Head. I have to really watch her with it, because she thinks it's funny to put the pieces in her body. It's sweet when she puts the lips on and gives kisses, but not ok when she tries to shove the ear pieces in her ear! 

Nora has been pretty healthy up til last night. I was hoping we were going to escape it, but the stomach bug has finally reached our house. Thankfully Lina had woken me up (because her tummy was hurting:-/) so after getting her settled, I went to check on Nora just in time to see her stand up and puke all over everything. It's amazing how large the splatter radius can be. Nora was all smiles as soon as she was cleaned up, and jabbered away while I cleaned everything and got her bed back together. She somehow managed to get a little bit on every piece of her equipment and of course on all the cords and tubing that she was attached to. I am very thankful for the sanitize option on my washing machine! I kind of want to burn everything else. 
Anyway, sorry to subject you to all that loveliness! Here's a couple cute pictures to make up for it;)

We let Nora watch a show while she eats because she needs to still while she is hooked up-I love how she always rests her face on her hands:)

The blue things on her toes are trach guards. They go on the end of her trach when she is hooked up to the humidity at night.  Nora loves to play with them and this day she walked around for quite a while with them on her toes:)

The main reason for this update is to ask for prayer.  Nora is having surgery on Wednesday (the 6th) in NYC. The Dr will be working on the right side of her face under her eye. 

Please pray for this sweet girl. This one is kind of major. Please pray for protection for Nora during the surgery-especially for her nerves/facial movement, and that she wouldn't lose too much blood.  Please pray for steady hands and wisdom for the doctors and everyone involved in her care. I don't like to think about it, because of all the risks.  But I know that God is taking care of our sweet baby girl and He is able to do immeasurably more than we can ask or imagine (Ephesians 3:20).  

Over Christmas, Nora wore a little red dress that I had bought when I was pregnant with her. It was shortly after my 20 week ultrasound, which was when we found out about Nora's condition. I remember wondering if she would live to wear the dress. It was a really hard time-how much do you plan for a baby when you're not sure if they will survive birth? Fast forward to present day, and our sweet girl is two years old, wearing her little red dress  and doing better than we ever thought possible! Oh I love that sweet girl.  God is so good.  Last night (before the puking;-) I was getting her ready for bed and went to the other room to turn her compressor on when I heard a distressed "Mama!" I found her in Lina and Belle's room where she had climbed onto the top bunk! (Even though that was very naughty and dangerous, I love that she loves her sisters so much:) As I scooped her off the bed, I thanked God for her voice, that she was able to call for help.  We were told that she may not be able to speak because of all the disease inside. She didn't make any noise for a very long time.  It was really crazy to see her cry when she was a younger-there was no sound at all. It was like watching a movie on mute. But now, this little doll is talking! And when she cries, you can definitely hear it:) It takes more effort for her to talk because of the trach, and it's not as clear because of the issues with her tongue/mouth, but she is doing an amazing job considering all that she has going on. God is so good. 
How did I get onto this tangent? I guess because God has been reminding me a lot lately of all that He has done and is doing. And not just in Nora. God has been so faithful, we have nothing to fear. I know whatever happens, He will take care of us. It's not always in the way I would chose, but it is always good. 
Ok, enough rambling...point of all this-surgery on Wednesday, please pray! And you could also pray for the preparation and the flight out there, and for the older girls that will be staying here.  

I know there are some of you that aren't on FB, but I will probably only post updates on Nora's FB page (Nora News) on the day of the surgery because that is easier, but I will try to put an update on here soon after.
Thank you so much for praying! It is such a comfort knowing that we go covered in prayer. We are so grateful for all of you!

XO

Two!

Nora turned TWO yesterday!

We cannot praise God enough for all that He has been doing in Nora's life.  God is so good!  Nora is doing so well. She is eating more and talking more every day.  She has endless energy, and loves to dress up in frilly dress-up dresses (with as many accessories as she can find) and dance and sing.  She would stay outside and swing all day if she could.  She is a very good mommy to her dolls and stuffed animals. She pushes them around in the stroller saying, "Beeeebee, beeeebee, beeeebee!" She loves to color, and likes to try to trace other people's hands, if you don't mind a few accidental stabs from the pencil:) If she sees someone wearing a hat, she must go find one for herself. One of her newest tricks is putting her HME on (the little white thing at the end of the trach that helps with humidification) It is so cute to watch her little hands work. I just love that child. 

One can never have too many accessories!

In October, Nora had bleomycin injections in the floor of her mouth and in an area near her lungs. We were able to have this procedure done here at Children's in Milwaukee-it was really nice to not have to travel!  Everything went smoothly, and she will go back to be checked in a couple weeks to see if they were effective.  She had her hearing re-checked a few weeks ago, which still showed a 30% loss.  It's better than it was, but they still want her to wear the hearing aid to help with her language development.  She also had her eyes re-checked, and the Dr said there isn't anything too concerning for now.  Her eyes wander occasionally, but it's not bad enough to do anything right now.  So that's nice that we don't have to go back to patching her eyes.  Nora is not a huge fan of that:)  Her ENT was very pleased with how she is doing when we saw her last week, and she also got a big thumbs up from pulmonary.  I can't remember what other appointments she's had recently, but the main point is that all the doctors are very happy with how she is doing! And we are too:) God is so good!

What a difference a year has made!  Although she is still as bald as ever:)

Nora goes to speech therapy once a week and her therapist has also been happy with her progress.  Nora loves speech therapy, because she gets to play with all kinds of new toys:)  She has been wearing the Passy Muir speaking valve for a little bit each day.  The valve allows air to go in through the trach, but then redirects it through the vocal cords and makes it easier to make sounds.  She will gradually increase the amount of time she wears it.  It's so funny to watch her when I first put it on-she gets this funny little smile and tries to blow it off (stinker!) and then laughs and starts jabbering.  She makes me smile so much:)  Once she is able to tolerate the speaking valve for longer periods of time, we can start talking about capping the trach.  Capping is basically putting a cap over the opening of the trach, which would allow her to breath in and out through her mouth/nose. Capping the trach is a step towards getting it out.  I couldn't believe I was even having that conversation with the doctor! Before Nora was born, we were told that if she survived delivery, she would most likely have a trach for life.  God is so good, I could cry.  

Aside from all her challenges, Nora is a very typical two year old, complete with the "terrible twos" temper tantrums (This particular one was on her birthday, because I made her put on clothes:)  

Nora's next surgery isn't until the beginning of January.  This is the longest break she's had, because I didn't want to schedule anything close to the holidays.  It's been really nice to not have to think about that for now!  It's been a really nice break.  She has been really healthy lately.  I haven't kept track of how long, but I know it's the longest she's gone without getting something. We are praying that this good health streak will continue through cold and flu season! 

Another one of Nora's favorite pastimes is sitting on the potty chair.  I am not even thinking about potty training at the moment (my least favorite part of parenting!) But I do let her sit on the potty when she asks, and she has gone few times! 

Looking back over the past two years, we have so, so much to be thankful for.  God is so good.  He has done amazing things in Nora's life, and has taken such great care of our family.  Thank you to all of you that have been that hands and feet of Christ to us these past two years.   We are so grateful for all of you faithful prayer warriors and supporters-we would not have made it this far without you! There are no words to fully express our gratitude and appreciation.  We are so blessed.  God has answered (and is continuing to answer) the many prayers on Nora's behalf.  I am constantly amazed at God's power and might as I watch my silly little girl do all the things we thought she may never do.  God is so good!   And we are excited to see what He has next!

NY surgery #6 update

We are home!  It's crazy that we were there and back already. 
Things started out a little hectic.  Nora had been sick the week before we left, so I took her in to get a culture taken from her trach. I wanted to make sure it was nothing serious/something that should be treated.  If we hadn't been leaving the next week, I wouldn't have done anything about it, but I didn't want to assume that it was something that would go away on its own, only to later find out that if we would have started an antibiotic, she would have been fine for the surgery.  Anyway, I took her in, but it takes a couple days to get any results, and in the meantime, she started feeling better.  Nora had her pre-op appointment a couple days later, so I told her pediatrician about her recent sickness. I still hadn't gotten the results back, but even if something showed up, I wasn't going to treat her, because she was doing fine symptomatically.  Whenever we do a trach culture, something always grows.  I only wanted to know if it was something serious.  Anyway, her pediatrician agreed and thought she looked fine for surgery.  She was still needing more suctioning than normal, but everything else looked good.  

Tuesday morning we needed to leave for the airport at 6:15am.  I got a call at 5am from the hospital letting me know that something had shown up in the culture and they wanted to let me know so I could start her on an antibiotic before we left for NY.  There was no way to get an antibiotic before we left, and I had already decided that I wasn't going to treat anything, but that call made me second guess myself and gave me a small ulcer. It was too early to call the Dr in NY, but I didn't want to fly out there only to be sent home because she wasn't healthy enough! Oh goodness. I prayed quick and didn't feel like we were supposed to stay, so we left for the airport. We hit traffic and I could feel my ulcer growing.  I'm sure if my mother is reading this, she would interject with "I would have left earlier if it were up to me" :) I don't like to leave too early because then I am chasing a very active little girl around a dirty airport! Anyway, We made it with 45 minutes left.  My ulcer continued to grow when our bags were "late checked", but as we got in our seats, I saw them throw our bags onto the conveyor belt. *Sigh* I don't know why I got so worked up-God always takes such good care of us, down to the smallest detail:)  

We had an appointment with the Dr Tuesday afternoon and he said he had no concerns about Nora's recent sickness and was comfortable proceeding with the procedure the next day without antibiotics.  Phew!

A little frozen hot chocolate to celebrate:) Thank you for all your help, Lydia!

On Wednesday morning, everything went as scheduled.  It was a short procedure-I think a little under an hour and a half? Just enough time for some breakfast and two games of cribbage (I won't say who won;) 

They injected several areas in her airway and the base of her tongue with bleomycin.  The doctor was happy with how her airway is looking, and thinks Nora could be ready for decannulation (getting her trach removed) by next summer!! There is no guarantee, and there are other factors that need to be discussed, but oh my goodness-music to my ears. Cue the Hallelujah Chorus! I immediately envisioned dropping all three of my children off and just going.  I don't know where. Just somewhere. Somewhere without any of our sweet, wonderful children:)  Right now, Nora has to be watched by a trained care giver, so that makes it tricky for Evan and I to get away.  Even if we could go away, I don't think I'd really be able to relax. Anyway, it was exciting to hear.  We talked about the next steps, which will be working on her tongue (which can be done at Children's in Milwaukee!) and then another face surgery in January.  

Nora did great after the procedure.  I wish I could have gotten a video of her waking up.  As soon as her eyes popped open, she flew up to a sitting position, took a look around and then held out her arm, tapped her IV with her sweet little finger and said "owie".  One of the parts that they injected affected the vocal chords, so I was VERY happy to hear her say something right away.  She held her arm out and said "owie" to anyone that happened to look her way:)  (I know I said it on FB already, but in case you didn't see it, Nora's new word is "owie" and everything is "owie".  A wall with chipped paint is "owie":) 

Nora showing off her "owie"

I thought that we were going to have to spend a night in the hospital, but we ended up being released after 2 hours!  It was SO nice to go home/back to the Ronald McDonald house.  The hospital is nice, but not being in the hospital is much nicer:)  

Nora had a slight fever when we left the hospital, which they said was normal.  You could tell she didn't feel great, but after a little tylenol she was comfortable.  They had prescribed a stronger pain med, but I don't like to give it unless she really needs it, and she did fine without it.  Her tongue/mouth started bleeding on Thursday, which happened the last time she had these injections.  She looks like a little vampire with blood dripping down her face.  Hopefully that won't last much longer. 

If I had ever woken up to this with the other girls, I would have freaked out! This was nothing compared to some nights.  Such a sweet, tough little girl.

We made it home without any issues on Friday-our plane was even 45 minutes early! 

Thank you so much to all of you that have been praying.  We praise God for how He is working in Nora's little body! Although she is not so little any more.  She is going to be two in two months!  Two years ago at this time, we didn't know if she would live past the delivery. God is so good!  I am amazed when I think of all that has happened.  I wish I had started writing updates from the beginning, so I could look back at things (although, judging from my track record, it probably wouldn't have been very consistent;) Anyway, we can not thank you all enough for all the prayer and encouragement and the many, many ways you have come alongside us on this journey.  We are so grateful. For those asking how to pray specifically-please pray that these injections will be effective and that there would be no harmful side effects.  Please also pray for wisdom for the doctors as we decide how to proceed with certain procedures and medications.  You could also pray for her speech, hearing, oral eating and eyesight-all things that are affected by her lymphatic malformation. Nora is such a fortunate little girl to be loved and prayed for by so many!  You are all so wonderful.  Thank you for praying! 

July trip and next trip

Nora loves to play with her medical supplies.  Who needs toys??

I have been meaning to write since we got back from Nora's last surgery (at the end of July!) It was all good things, and was just going to take a second to write, so I kept thinking "I'll do that real quick after I do___" Things haven't been that busy, and I think that is my problem-I don't have a schedule anymore. Not that I really had much of a schedule before, but when things are so busy, I feel like I get more done because I know that if I don't do something immediately, it's not going to get done.  Not that I was super productive before either...oh goodness. Anyway, I am hiding from the older girls while Nora naps, intent on writing this from start to finish in one sitting.  

The July trip went great. The doctor was very happy with how things went.  I wrote about it in my last update (I think?)  If you ever have any questions, I am more than happy to answer-I know I leave a lot out.  One of these days I want to start back at the beginning, because I know it was helpful for me to read about other people's experience when we were first learning about Nora's diagnosis.  It's on my "eventually" list:) Anyway-Nora did really well coming home and didn't get sick like she usually does when she comes off steroids.  She did have fevers a few weekends in a row, but she was fine.  

Some pics I meant to post from the July trip...

Reading with Aunt Tonya the night before the surgery

 We ended up waiting at least 3 hours longer than expected for her surgery-Nora kept herself occupied by watching Pooh Bear, play peek-a-boo, and charming the nurses:)

 She had to wear this compression wrap for a while after the surgery-she reminded me of that one little rascal

 frozen hot chocolate with Aunt Jenna

 Nora had her stitches removed under anesthesia this time.  They gave her this little teddy bear while we were waiting-she loved it!  I should have taken a video, she was being so cute with it

The surgical drain was ready to come out after 4 weeks, but I couldn't get an appointment to remove it until the end of the following week.  I have taken it out myself in the past, but this time there was a special "ghost stitch" to close up the site where the drain goes in. I wasn't sure how to work that, so they wanted me to take her in to have it pulled.  I contemplated pulling it myself anyway, because I was so done with it and was afraid it would get infected. She didn't have a stitch to close the hole the other times, but I decided to follow orders.  But then the drain site got really red and started oozing green grossness and her incision site was looking pretty rough as well.  Thankfully, Nora had a speech appointment the day it started, and I saw one of her ENTs down the hall and asked if he could come take it out quick.  I love our doctors-I am so thankful for them! He came right into our room, pulled it quick and sent in a script for an antibiotic (because it was definitely getting infected).  And he ended up not even using the ghost stitch, so I should have just done it myself days before! Oh well-next time I will know:) 

Once the drain was out and she started the antibiotic, she was all good.  Just in time for us to take a little road trip to MO! My friend Cheryl and I drove our kiddos down (5 total) to visit some friends in Springfield and Kansas City for a few days each.  There were an additional 5 kids at each house, so 10 kids total at each!  10 times the fun:) The kids all played really well together and it was so nice to be away from everything.  I was a little nervous being away from our doctors, especially after the recent infection, but overall Nora did great.  She did have one night where she threw up and had a fever, but it didn't last long.  Nora did really well on the drive, and had fun playing with all the kids.  She was really excited that one of the houses had a cat (She currently loves cats I guess). The cat had to stay outside because I am allergic, so Nora would look for it out the window and meow:) 

Nora relaxing during our 10 hour ride. I thought I had a picture of the whole crew, but I guess not

Over all, Nora is doing so well!  She is such a light and joy in our lives.  A constant reminder of God's power and goodness.  She is doing really well with oral eating-she can eat just about anything!  I love seeing her stuff her little face:) She still is primarily G-tube fed, but she is gradually increasing "real food" intake.  She is doing pretty well with her speech. She says a lot of words in the back of her throat-for "blanky", she says "inky" and for please she says "ease".  She jabbers a lot, which is so cute!  I love watching her "talk" to me-she is so expressive and makes all kinds of gestures and then looks at me like, "I just told you something, aren't you going to answer?" Oh I love that girl.  She is really going to miss her big sisters now that they'll BOTH be in school this year.  I love watching them all together.  I have the sweetest girls ever:) If the older girls are sad, Nora gets a very concerned look on her face and will go over to them and hug them and pat them gently.  Lina and Belle are very sweet about letting Nora play with them and love to teach her new things.  I'm going to miss my little helpers while they're at school!

Next week, we will be making another trip to NY.  This trip, Nora will be having an airway procedure.  They will either inject bleomycin or do laser treatments.  They decide once they are inside I guess.  Please continue to pray for Nora!!  I was feeling great about the procedure-she's had it before and has done great. And then someone posted a bad experience their child recently had after bleomycin, and I felt the knots in my shoulders start trying to strangle me.  I *know* that I don't need to worry, because God will be in control no matter what happens, I just need to constantly remember to cast all my cares and worries on Him, and remind myself of all that He has already done.  God has never disappointed us.  He has always given us all that we need, and so much more!  Things might not have always gone the way we would have planned, but we trust that God has a greater plan than we could ever come up with.  We would really appreciate prayer that we will continue to feel peace, and also that Nora will be spared from negative effects and that things will continue to go well. Thank you so much for praying-we are so incredibly grateful!  I doubt I will update again before we leave next Tuesday (the procedure will be Wednesday, the 9th) My sister Lydia is coming with me this time (If you don't know and are wondering...I have 6 sisters (and one brother:) very handy for travel companions during these trips! I love my family:) We will only be gone 4 days this time, which will be SO nice! Re-entry is much easier after a shorter trip.  Anyway, I will try to update soon after the procedure!

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