We're back!

We made it home!  We got back late last Monday night (the 17th) .  Our flight was delayed several times, so we got to hang out for 4 hours in LaGuardia airport.  Nora was smiling and waving and entertaining every one around us while we waited.  She put a smile on everyone's face and made the wait much more bearable (for everyone else;-)  One guy bought her a little stuffed toy because he said she was just so sweet.  Seriously.  Such a sweetheart!  I am so thankful my mom was able to come and help me fly home, I wouldn't have made it without her!  With all the stuff we had to keep track of, plus trying to contain a very active little girl in a dirty, crowed airport-I was exhausted by the time we boarded.  Once we got on the plane, Nora slept the whole flight home.  It is SO good to be home!

Nora came down with something after we got home-I'm thinking something she picked up in the airport. She is very congested and has been needing to be suctioned a lot more than usual (like every 5 minutes at times!)  She has also been spitting up a considerable amount a couple times a day.  The Drs had me bring her in to make sure it is nothing serious.  They think it's probably something viral and we just have to wait it out.  If you would, please pray that this sickness will be over soon and that she will stay healthy!

Backing up a little...Nora got her stitches removed last Friday (the 14th)  She did so good.  She wasn't happy while they were taking them out, but she was all smiles as soon as they were done.  I didn't count, but I would guess there were close to 100 stitches?  However many, it was a lot.  But the incision is healing really well!  She still has the drain in the right side of her face, which is a challenge.  I try to keep it pinned on the back of her clothes to keep her from playing with it or chewing on it (because medical equipment is just so much more fun than toys:)  It gets tugged on sometimes, but there is a stitch holding it in, so thankfully it has stayed in.  It makes me shudder just thinking of it.  My poor baby!  She is such a trooper.  The doctor said the drain will need to stay in for 2-4 weeks (it's been over two weeks now)  I empty the drain several times a day and measure the output.  So far, it hasn't slowed down at all.  She started her medication again on Monday, and the doctor thinks that might help reduce the drainage.

I didn't want to scar anyone with pics of the incision right after surgery! These pictures are recent. As you can tell, the incision starts at the top of her right ear, goes under the chin, and stops just below the left ear.  That is the drain behind the right ear. In the bottom picture you can see the bulb thing that collects the drainage that I have pinned to her pjs in the back:)

As for the next steps, we are planning on going back to NYC the beginning of January for an airway procedure.  Dr. Waner said they have gotten kids with worse airways decannulated! (That's the fancy word for getting rid of the trach:)  It was really exciting hearing them talk about hopefully getting her trach out within the next couple years!! I can't even imagine.  I know it's not a for sure thing, but it's exciting to think about! Before she was born, we were told that, if she survived delivery, she most likely would have a trach for life, and there was a good chance she would never eat by mouth or be able to talk/make noise.  But "My God is greater, my God is stronger, my God is higher than any other, my God is healer, Awesome in Power" (Chris Tomlin) ...Nora says "Mama!" Ok, not intentionally:)  But she makes the noise that sounds like "Mamamamama" It's amazing!  She's been making all kinds of noises-my heart bursts just thinking about it:)  AND, she's been eating food by mouth!  Not a ton, and still only stage 1 baby food, but I am positive that someday soon we will be able to ditch the G-tube and she will be eating steak;-)  It would be amazing if she could lose the trach as well!!  We are so thankful for the amazing work God has done and is continuing to do in Nora's little body.  She is a constant reminder God's goodness.

This past year has been filled with countless blessings from family, friends, and strangers.  Constant prayer, notes/texts/emails/calls of encouragement, thoughtful and generous gifts, childcare for the older girls, meals, help with the house-just thinking about it all blesses me all over again!  The fact that many of these blessings come from people we have never even met just blows me away.  (And I hope we get to meet you all some day!) There truly are no words to adequately express our gratitude for everything.  Thank you to all of you that have been the hands and feet of Christ to us.  I don't know what we would do with out you. You have helped considerably lighten the load of this journey. We thank and praise God for all of you!

For those of you asking how to pray: Nora still does not have complete movement of her mouth, but it has improved a little.  The doctor said that it might take a while, but she should regain all movement since none of the nerves were cut. Please pray that will be the case!  Please pray that the drainage would stop so that the drain can be removed soon (and that the drain would stay in place and the drain site would not become infected!) Also, as I mentioned above, please pray for healing from whatever sickness she is currently fighting. Again, we are so grateful for you prayer warriors that are lifting Nora up.  It is such a blessing knowing that so many of you have Nora on your prayer list every single day.  As I've said before, we know you're praying, because we see God answering! I was reminded of the story in Genesis where God told Sarah that she was going to have a baby.  She laughed at him and God responded, "Is anything too hard for the Lord?" (Genesis 18:14) Like I said above, Nora has already blown away our expectations and I am so excited for God to continue his healing work!

Annie (my Cousin-in-law:) is doing a Thirty-one fundraiser for Nora.  If you have some Christmas shopping to do or need some help getting organized, check out this link for some cute, fun products!
https://www.mythirtyone.com/forms/frm_event_my_events.aspx
You should be able to choose "shop now" on Nora's fundraiser.  Annie will be taking orders until December 9th, to ensure items will arrive by Christmas.  If you have any questions about the specials or anything else, you can email her at anniemcclain31@gmail.com

I don't think I've ever posted a picture with her G-tube?  It's the white thing that is peeking out from under her shirt.  There is an extension that hooks into that tube and formula is pumped into her belly (unless she chews on the extension and it comes out... then everything in her stomach pours out onto everything around her while the pump feeds the ground, or the bed-stinker!) I just couldn't resist posting one more pic of this little cutie:)

11/12/14

Psalm 66:3-5

Say to God, "How awesome are your deeds!  So great is your power...All the earth worships you and sings praises to you; they sing praises to your name." Come and see what God has done: he is awesome in his deeds toward the children of man. 

Things are going great! Nora was discharged from the hospital Saturday evening.  Sunday morning we packed up and moved to the Ronald McDonald house in Manhattan.  The remainder of the trip will be follow up appointments at the office in Manhattan.  It's not next door, like the RMH in Long Island, but it's only about a 15 minute walk away.  Evan left Sunday afternoon, so I had one night just Nora and me, and we did just fine:)  On Monday I walked to the doctor's office only to find out that the hospital hadn't scheduled the appointment like they said they had.  I scheduled it for the next day and got a nice little walk in-it was a beautiful day!  Kristen arrived and we decided to walk around the city since it was so nice.  Tuesday we saw the doctor and everything looked great!  We celebrated with a frozen hot chocolate from Serendipity, which is just a couple blocks from the office.  So delicious-I think we will make that a tradition:) On Friday, we will discuss the timeline of things/when the next surgery will be and what we do from here.  

We love having Aunt Kristen here!

Nora seems to feel better each day.  She isn't needing to be held constantly, and I only give her pain medication occasionally.  She is a tough little girl!  She loves waving at people and gives them a shy little smile. Her little smile is so contagious:) I think she likes being around all the people here. 

We are so grateful that we were able to come to NY and work with these doctors.  We feel like she is in the best possible place and praise God for getting us here.  I met a family from Switzerland who was here for their 17 year old son who also has a lymphatic malformation.  His is on his face just like Nora's.  He has had surgeries in Switzerland that did not go so well, but he's seen very good results since starting with Dr. Waner.  We can't thank God enough for the way he led us here and for the amazing way he has been providing for it all.  We can't thank you all enough for the overwhelming love and support and generosity you continue to pour out on us.  We are so grateful and humbled. We pray daily that you will be blessed as you have blessed us.  

We also can not thank everyone enough for your persistent prayers.  It means so much to know that our family is being covered in prayer.  Please continue to pray for healing, protection from infection and sickness, and restoration of facial movement.  She is able to move her mouth, but still doesn't have complete movement, specifically the bottom right side.  Please also pray for Lina and Belle as this time is kind of crazy for them too.  

For anyone in the Milwaukee area, Consider The Lilies floral designs is doing a fundraiser for Nora. The owner, Amanda, has created a design called the "Nora's smile" and will be donating all proceeds from that arrangement! For those of you on Facebook, there is a link on my page, or you can search "Consider The Lilies" on FB.  You can also visit her website  www.considertheliliesdesigns.com

Thank you Amanda! 

This picture was right after surgery yesterday

Nora is doing well today. She is still in pain and just wants to sit in our arms, but she is a little more awake. The right side of her face is pretty swollen, even more than yesterday. The doctors don't think it's a problem right now, we'll just watch it. She is such a sweetheart! This morning when one of the doctors came in, she got the sweetest look on her face and gave him a shy little wave-it was adorable. She is such a trooper! 
We don't know how long she will be in the hospital. Tomorrow (Saturday) would be the earliest she would be able to leave. I'm hoping no later than Sunday morning because Evan leaves Sunday afternoon. After Nora is out, we will be here for another week for check ups, and to talk about the next steps. My sister (Kristen) will be coming on Monday to help and hang out-so excited to see her!
Thank you so much for all the prayer and encouraging notes. Whenever I feel like I'm on the brink of losing it, someone texts, emails or leaves a voice mail with just what I needed-God is so good!  I got maybe two hours of sleep last night, but was able to sleep today once Evan got to the hospital.  I'm so glad he is here so we can trade off! 
Please continue to pray for healing for Nora and for those nerves. Because her face is still so swollen it's hard to tell the full extent of things.  The right side of her mouth isn't moving like it usually does, but we are praying once the swelling goes down it will be better.  She is asleep right now so I'm going to join her! Thank you for praying!

We got a couple smiles today!

Chin is trimmed;-)

When my nephew was praying for Nora, he prayed for the doctors "when they trim Nora's chin"-I thought that was a good way of putting it:) Her chin is trimmed! Nora did great during the surgery and the doctors felt it went really well. I will give details and pics later but right now I am writing this with my eyes closed and need to sleep. I just wanted to let everyone know she is doing well! Thank you so much for praying! Please pray for the healing process and please also continue to pray for the nerves-we won't know how things really are until she wakes up more. Thank you😘

one last update before the big day..

Nora on the plane after being woken up by mommy trying to take a picture:)

Monday morning started at 3am. Our flight didn't leave flight didn't leave til 6:45, but we wanted to make sure we had enough time to get through security with all of Nora's stuff, so we left the house at 4:30 (thanks for picking us up dad!) We had a letter from the doctor for all Nora's equipment, supplies, and medication, but even with that, I've heard some people had trouble with security. We ended up not even needing the letter. Because Evan is military, we were 'TSA approved' and we didn't even have to take our stuff out of the bags!  So security was nice and easy.  I was a little nervous about the flight because one mom I talked with said her son with a trach needed oxygen during flights (even though he never used it any other time). But Nora did great on the flight!  It wasn't a full flight so we were able to take her car seat on and she slept for the first part of the flight.  She probably would have slept longer, but she was smiling in her sleep, so of course I had to try to take a picture;) and I woke her up! She was very happy while she was awake.  She just played in her seat and chewed on toys:)  We couldn't have asked for a better flight!  

After the flight, we made it safe and sound to the Ronald McDonald House in Long Island.  I had never been to a RMH, so I wasn't sure what to expect.  The one we are staying at was recently renovated (they just finished two weeks ago!) and it is amazing!  Everything is beautiful and the people here are so nice and helpful.  Every night, different volunteers from the community make dinner-what a blessing!  There is also a pantry with food that has been donated from the community that we can have anytime.  

A few pics of the RMH 

Lina asked if Ronald lived at the house, so we took this picture for her

After we got to the RMH, we dropped our stuff in our room and then headed over to the hospital for some appointments.  The hospital is right next door so we were able to walk right over.  We talked with the Dr. that will be taking care of Nora's airway during the procedure, and the anesthesiologist, and gave the same information to a million different people;-)  Nora also had a physical and blood work done.  After all that, she was then declared healthy and ready for surgery!  

There had been a mix-up with the equipment and supplies that our medical company was sending to the RMH for us, so after her appointments we worked on getting that straightened out.  I won't bore you with the details, but everything eventually made it there and got all set up and we all went to sleep exhausted:) 

Tuesday, we had one last appointment in Manhattan at 10:15, so we left the RMH at 9.  There are volunteer drivers at the RMH that will take you to medical appointments that aren't within walking distance-what a huge blessing!  We got to the appointment at 10:15 on the dot...and then waited for two hours!  Nora has been so great during all the appointments and running around.  She didn't mind waiting, and we didn't have to be anywhere else, so it was fine:) I talked to another mom in the waiting room who said that it's always a wait to see Dr. Waner, but it is very worth it.  She had great things to say about him, which was nice to hear:)  

We didn't want to let Nora crawl around on the floor in the waiting room, but after an hour, she would not be restrained any longer!

It was really nice to meet Dr. Waner.  He was very knowledgeable about Nora's condition, and you can tell he has dealt with this before.  His plan for tomorrow is to check her airway first and possibly do some lasering in there.  (We actually just found out that insurance is saying they will not cover the laser, so we are going to tell him not to do it tomorrow.  We will hopefully get that sorted out by the time she has her next procedure:) He will then do some de-bulking on her face under her chin. He was very positive about things and said he thinks things should go very well. We feel like he has a good understanding of things and we feel very comfortable and at peace with the surgery tomorrow.  

We wore her out in the waiting room, so we were able to have a good conversation with the doctor:)

After that appointment, we walked around the city for a while.  Nora slept through most of it:)  It was fun just walking and talking (and eating;) We haven't had much time just Evan and I, so it was kind of like a date (during the times Nora was sleeping:) We decided to take the train back to Long Island-we should have thought that one through a little more!  We had the stroller and baby carseat, along with the suction machine and her emergency supplies and a bunch of other stuff so we couldn't really fold up the stroller.  We left it open and stood with it by the entrance, making it difficult for people to get on and off.  Thankfully everyone was very nice and helpful and didn't make us feel like the lunatics I'm sure we looked like:)  We made it back to the RMH and, once again, went to bed exhausted. 

Today (Wednesday) we didn't have any appointments!  We enjoyed not having anywhere to be:)  There were a bunch of phone calls about insurance and last minute things for tomorrow, but over all, a nice day.  

We have been so blessed by all the love and encouragement from everyone.  Nora is a lucky little girl to have such amazing support!  Thank you for being a part of this journey with us.  We cannot thank you enough! A huge thank you to my parents and everyone else at home taking care of Lina and Belle.  Knowing they are being well loved and taken care of makes everything here much easier:)

When Nora was born, one of the doctors said things had gone better than they could have ever hoped.  We are praying that will be the case tomorrow!  Some of the are possible risks during the surgery are nerve damage, excessive blood loss and infection.  Please continue to pray for protection for Nora and wisdom for the doctors.  The surgery is scheduled for 8:30am (Eastern time)

We are so thankful for how God has been working in little Nora's life and are excited for this next step tomorrow.  Psalm 63:2-5 says,

I have seen you in the sanctuary

   and beheld your power and your glory.

Because your love is better than life,

   my lips will glorify you.

I will praise you as long as I live,

   and in your name I will lift up my hands.

I will be fully satisfied as with the richest of foods;

   with singing lips my mouth will praise you.

The last part about singing praises reminded me of the Matt Redman song, 10,000 reasons.  I pray that tomorrow "whatever may pass and whatever lies before me, let me be singing when the evening comes" 

Just a couple more days...

We could really use some extra prayer these next couple days before we (hopefully) leave for New York!  Our flight leaves early Monday morning, and we have appointments Monday and Tuesday.  As long as everything goes well, Nora will have her first procedure on Thursday!  In order for this to happen, she needs to be healthy.  Wednesday night Nora started getting sick.  She had a fever and her tongue swelled up and she did not sleep more than a few minutes at a time and just felt miserable.  I took her to the doctor on Thursday and they put her on an antibiotic and steroid.  I talked to the doctors in NY and they said if she had a fever today (Friday), we would need to reschedule the trip.  God is so good, and so far today, she is feeling much better.  Her tongue looks much better and there have been no fevers.  Please pray that she continues to be fever free and heals completely from whatever caused the sickness initially!  Please also pray for the flight out there.  I am a little nervous flying with my little trach baby!  Please pray that she will tolerate the flight well and there will be no medical complications.  And lastly, please continue to pray for the procedure-for protection during the surgery, especially for her sweet little smile:) And also for the surgeons and all that will be involved in her care-for gentle hands and wisdom.  Thank you all so much for all the amazing love and support! Hopefully the next post will be from NYC!!

Nora loves to look out the window by her crib.  The other day she fell asleep like this

All good things, all good things...

If you didn't catch the Olaf reference (from Frozen) in the title, you should come over and watch;-)

Nora had another airway evaluation at the end of last week, and her airway looked even better than the last check! The ENT and oncologist were very happy about the progress. It was such a positive, encouraging appointment! Nora has been making little squeaks and noises lately, which has been SO fun to hear. During this last appointment, the doctor took the trach out to put the scope down and I heard a real scream! I wish I could have recorded it, it was so cute:) Because things look so good, the ENT said Nora can try using a Passy-Muir speaking valve (it goes on the end of the trach and has a valve that opens when she breathes in and then closes when she breathes out, allowing air flow around the trach and up through the vocal chords to make sounds) I am SO excited to hear her little voice better! I am hoping to get an appointment with the speech pathologist soon so we can try it.

At the appointment, we also talked about the surgery plans for November. We won't know what all will be done during this procedure until after we have the consultation in NY. I'm pretty certain they will remove some of the mass below the chin area, and the surgeon had also mentioned possibly working on the airway and the floor of her mouth. The ENT here strongly recommends not doing any work on the airway this trip. The floor of Nora's mouth has also improved a lot, so the ENT suggested waiting on that as well. The medication (Sirolimus) has been doing a lot of good things, but there is no way to know what will happen once she goes off (we will probably try stopping after she's been on it for a year). The oncologist said that with some people, the problem areas seemed to have 'melted away' and didn't come back after they stopped medication, and some experienced re-growth/return of symptoms as soon as they stopped. They have only been using this medication for LMs for maybe 5 years? So it's not like they have that much data. All that to say, we will have to make some decisions once we actually see the drs in NY. It will be interesting to see if they are in agreement with our doctors here. It's hard when there are so many differing opinions and we have to decide what we think is best. We are so thankful for God's guidance with decisions like these.

We are scheduled to leave for New York November 3 and will have appointments on the 3rd and 4th. After the doctors meet Nora and do whatever testing they need to do, we are hoping to come up with a treatment plan/schedule. As long as everything looks good, and we are comfortable with the doctors, Nora will have her first procedure November 6th! One question people have been asking is if this will be a 'one and done' type surgery. I wish! One mom that I've been in contact with (whose daughter is currently being treated) just had their 11th trip to NY (over the course of a year and a half). So we will potentially be doing a lot of traveling. This first trip, Nora and I will be staying for two weeks (as long as everything goes as planned). Evan will be there for the first week, and then my sister from FL (Kristen:) is going to come stay with us for the second week. (Thanks Derek!!) While we are there, we will be staying at a Ronald McDonald house. I've never stayed at one, but I've heard great things about them, and it is MUCH more affordable than a hotel. The first week will be appointments and the procedure, and the second week will be check-ups and making sure everything is ok before they send us home.

Some wonderful friends of ours have set up a fundraising page to help cover expenses associated with Nora's surgeries. http://www.youcaring.com/medical-fundraiser/no-shave-for-nora/233782
Words escape me as I try to accurately express how grateful we are for all the love and support that has been poured out on our family. We are so humbled and overwhelmed by God's goodness shown to us through all the amazing people in our life.
There are so many of you that tell us you pray for Nora and our family daily-we know you do, because we see God answering those prayers! Nora is doing so much better than we ever hoped, and I know that God has good things in store for her. Evan and I feel a peace that passes understanding, and God continues to give us strength for each day, even when we're running on 3 non-consecutive minutes of sleep;) We feel your prayers! In addition to your prayers, we are blown away by the generosity of all of you who have given financially. We are so blessed. There are no words to adequately express our thankfulness and gratitude. We pray God will bless you all as you have blessed us.

For those of you asking how to pray specifically, one thing we have been praying for in advance is Nora's sweet smile:) There is a facial nerve that could be damaged during the surgery-please please please pray for protection for that nerve. Pray that God would guide the surgeon's hands and that she would come out smiling as big as ever! Oh I love that smile:)

Please also pray that Nora would stay healthy . She is currently fighting something-please pray it goes quickly and that she will be healthy for November! You could also pray that her adoring big sisters will stay healthy (which will greatly help in the fight to keep Nora healthy:) There have been a couple times that I thought Nora was getting sick (she gets a snotty nose and needs to be suctioned every five minutes!) but both times it ended up being one or two sleepless nights and then she was better. So I'm hoping that will be the case this time around;)

We are so thankful for how positive things have been lately and want to praise God for all He has done and is continuing to do. I'll end with Psalm 103:1-5. We had it on the wall in Nora's NICU room and I just think it's fitting:)


1 Let all that I am praise the Lord;

with my whole heart, I will praise his holy name.

2 Let all that I am praise the Lord;

may I never forget the good things he does for me.

3 He forgives all my sins

and heals all my diseases.

4 He redeems me from death

and crowns me with love and tender mercies.

5 He fills my life with good things.

My youth is renewed like the eagle’s

New Plans

Nora's first time sitting in the grass..she was not a fan!

I keep putting off writing an update because I keep hoping that *THIS* week we will know more. "I'm hoping to know more by the end of this week" I think I've been saying that for the last 9 months. But we finally have some plans! (although plans can change in an instant;-) 

As always, this may not be completely coherent, and I may be leaving things out-feel free to correct or ask questions:) 

 At the time of the last post, things were pretty scary. We kept going back and forth as to what we should do. We had really wanted to try the diet, but things weren't coming together quickly enough. We sent Nora's info to a Dr in NYC (who has dealt a lot with this kind of issue) and were waiting to hear back from him, but it was taking a while. We felt like we needed to start something, so we decided to put Nora on Sirolimus for now. When I told the ENT we were going to start, she was so happy-she gave me a huge hug and couldn't stop smiling. She said she had been so worried about Nora and thought this was a good decision. Her reaction was helpful for me, because I wasn't very excited to put Nora on it. It has been 3 weeks since she started, and so far she is tolerating it well. Last Thursday at her ENT apt, Nora's airway looked really good! (compared to before:) A HUGE answer to prayer. We had been going in weekly, but the ENT said she is comfortable waiting 4 weeks since Nora seems stable now. Her tongue is still looking good, and the mass on her face has gone down a little too, so it seems like this medication is doing something.
We have decided that we are not going to do the diet for now, and have been talking with the doctor in NYC about starting surgery. I have talked with the parents of several other children with lymphatic malformations who see this doctor (Dr. Waner), and have heard and seen very promising things. Dr. Waner thinks that Nora could get her trach out someday! I'm not holding my breath, but I pray constantly that would be the case. And we feel like if any doctor could get her to that point, it would be him. 

As of now, Nora is scheduled to have her first procedure the beginning of November. (When I started writing this earlier, it was scheduled for the end of Oct, but as we have experienced-things can change quickly and often:) We are really excited to get started. From what I understand, this first visit Dr. Waner will start by removing part of the mass under the chin, and also do some sclerotherapy and laser in the airway. I don't like the thought of my baby going under the knife, but I can't wait to get some of the weight off her face! And give her a better range of motion. We are so thankful for how well Nora has been doing developmentally despite everything. The extra weight doesn't seem to slow her down! There are some things she can't do as well, but for the most part she is right where she is supposed to be developmentally. She is now pulling herself up on things and starting to walk along the furniture-this girl likes to move! As much as I don't like mornings, I love looking over to her crib to see her standing there staring at me with a huge smile on her face:) Oh I love that girl. She loves being in on all the action with her crazy sisters. Her sisters adore her and the feeling is mutual. In the morning when Belle wakes up, she stumbles into the living room with a solemn/grumpy face until she sees Nora-then she lights up with a huge smile and says in her high-pitched baby voice, "HIIIIIII Nor-Nor!!!" To which Nora responds by happily waving her arms with an enormous smile on her face:) Lina is like a little mother to Nora and wants to do everything for her (she would change the #2 diapers if I would let her:) We have even let her suction Nora a few times (with very close supervision!) I think a career in nursing is in her future. Although she doesn't do well when Nora throws up-but who likes that? Anyway, getting off-topic...to summarize, Nora is doing well at the moment and we are hopefully going to New York to start treatment soon! 

"Thank you" is so inadequate, but it's all my mush of a mind can come up with, so-thank you to all of you that are so faithfully praying for Nora. We can see God answering our prayers! Please continue to pray for healing for Nora and protection from illness. She had some respiratory/breathing issues a couple weeks ago that had us in the ER for a bit, but she seems to be done with that. With the older girls, I would let them play with kids with green snotty noses and wasn't too concerned if they were sucking on the shopping cart or chewing on shoes-they never got sick! I can count the number of times they've been to the doctor (besides regular check-ups) on one hand. With Nora, I have to be really careful since she is more susceptible to things because of her trach, and now even more so with the medication she is on. So prayer for health is appreciated! 

Please also pray for this first NY trip. Like I said before, I've been in contact with a few moms who have made these trips many times already-I am so grateful for their input! Please pray that insurance would cover things and that everything would come together smoothly. Flying with a baby Nora's age is not so fun, and add in all the extra things we will be hauling-it will be interesting! One good thing about Nora not being able to make noise is that if she screams on the airplane, no one will be bothered:)

Before I end, I need to thank our secret santa-whoever you are. We have received several anonymous envelopes with very generous gifts inside. One day we were driving home and talking about a stressful issue. The girls asked to turn some music on, and the first song that just *happened* to come on said, "Don't worry about anything, instead, pray about everything. Tell God what you need, and thank Him for all He has done" (Philippians 4:6) Such a timely reminder! When we got home, the first envelope was in the mailbox:) Whoever you are, I hope you read this-we just want you to know what blessing and encouragement you have been!

 Nora is our little Supergirl:)

Nora had a bronch/scope 2 weeks ago to evaluate her airway.  The ENT said things had gotten worse, and was encouraging us to start treatment soon.  It was disappointing to hear-I was secretly hoping things had improved. 

I talked with Seattle and it was decided we would shoot for mid-August.  Things have been slow going because Nora is the first one doing the diet for this reason, so they are trying to get things set up.  

Last week during an apt with the ENT, Nora had another scope because she was making a 'honking' noise when she breathed.  The scope showed that her airway was collapsing.  They were able to give her a longer trach right away to hold it open.  It had gotten worse since the scope the week before, which was not nice to hear.

Nora has been sick the past couple days, so we had an appointment today to check her airway again and see how things are going.  

The ENT was saying that with the new/longer trach, things are fine for now, but there is no way of telling how fast things will progress.  Things have digressed pretty quickly recently, and there is no way to know how things will go from here on out.  After a certain point, there is not much they can do for her.  The ENT was saying that she's been talking with the other doctors and they are all very concerned.  She had been ok with us trying the diet before, but now she is thinking that it may be unwise since things aren't looking very good.  If Nora were more stable it would be ok to try experimental things, but she feels like we should try something that is proven (Sirolimus).  Although there is no guarantee that help either.  

So, we don't know what to do.  We really wanted to try the diet first but we don't want to be foolish.  But there is no guarantee that either options will do anything.  I am going to try to get in contact with the Seattle Drs and see if we could start it soon/really soon (the two main ones are on vacation right now-of course).  If they can't do it soon, we will probably try the Sirolimus.  

For those of you that are praying, we can't thank you enough.  Please pray that things would not get any worse.  It is scary to think about.  Especially while I am with the doctors and they are asking me how I'm doing while giving me sympathetic/worried looks that remind me that things really aren't good.  But-God is good, and I know that He is in control.  And worrying isn't going to fix anything.  It reminds me of a song from when I was younger, 

"Things are looking right for a miracle.  

There's no reason I should get hysterical.  

Open up the doors, God you've done it before. 

 Things are looking right for a miracle"  

Good old Steve and Annie Chapman:) We have already seen God do miracles in Nora's little life, and we are praying for some more now.  

Please also pray for Evan and I as we decide what to do.  We don't want to act out of fear-please pray that we would know which is the best option.  If it is Seattle, please pray that things would come together quickly.  If it is the Sirolimus, please pray that we would have a peace about it.  We will be going in weekly to keep a close eye on her airway, but we would like to do something soon.  

A huge answer to prayer-her tongue is back to normal color and hasn't bled in almost 2 weeks!  That has been SO nice-much less laundry too:) 

Aside from the airway issues, Nora has been doing well.  She is a very happy, content little girl:)  I can't believe she is 8 months!  She is starting to wave and trying to climb up on things-a little monkey just like her big sisters:) 

Thank you again to all of you that are praying, we are so blessed 

Making plans

Nora loves hanging out with her big sisters!

I feel like I need to write a disclaimer-I don't really know what I'm talking about. If you're reading something and think, "Ummm, that's not correct, she's crazy" you're probably right. It's dangerous letting a sleep-deprived lunatic try to relay information, but I'll try my best:) I try to keep things short as possible, but then sometimes leave out important information. But then sometimes I ramble on (like now:) and don't make any sense either...feel free to ask questions or correct me. 

Thank you so much to all of you that have been praying for Nora and our family. We are so grateful!  

When we met with the vascular anomalies team last week, we were hoping to walk away with a clear plan. Instead, we left more discouraged than anything. A couple of the doctors were really not comfortable with trying the diet. Their reservations made us question things, even though we had felt very comfortable and optimistic about it going it to the meeting. We still didn't feel right about trying the Sirolimus, so we asked the doctors if they would be willing to talk to the Dr. in Seattle, hoping that would put their minds at ease. They said they would, but last we heard, they were still trying to get in contact with Seattle. 

Yesterday, we went to a conference for families of kids with PHACE syndrome. There was a photographer, Rick Guidotti, who spoke about his organization, Positive Exposure. One of our Drs wanted us to hear him and have him take Nora's picture. It was nice meeting him and hearing about his organization. (Here is a link if you want to check him out-he used to be a photographer for some high-profile clients, but now runs not-for-profit organization that wants to "transform public perceptions of people living with genetic, physical and behavioral differences – from albinism to autism" <http://positiveexposure.org/> ) While we were there, a mom introduced herself and said she was from Seattle. I told her we had been talking with Dr. Perkins in Seattle, and she said her daughter sees him too! She had great things to say about him, which was very reassuring to hear. I love how God arranges these 'random' meetings at just the right time:) After talking with her, I walked back to Evan and found him talking with one of Nora's doctors. She was saying they had been in contact with Dr. Perkins. They are still waiting to talk to one more doctor, but she said she thinks we should start making plans to go to Seattle. I was not expecting her to be so on board with it! 

That was the confirmation we needed. So, as of now, we are going to move ahead with trying the diet. We feel a total peace from God about the decision. So...now we need to start figuring things out. My head is kind of spinning, thinking about all things we need to do. First I need to talk with Seattle and see if they are still up for trying it! If so, we are hoping to start it soon. 

For those of you that are praying for Nora, please pray for wisdom as we proceed, and that things would come together nicely.  We are asking that God will continue to provide and open doors if this is His will, and if it's not, that He would make it clear. 

Nora's tongue seemed to be a little better for a couple days, but it is currently as swollen as ever and still bleeding off and on. Please continue to pray for healing for that. Please also continue to pray that she stays free from infection/sickness. The rest of us are feeling a little under the weather, and it's no small task keeping her adoring big sisters off of her! 

Besides her tongue, Nora has been doing well. Her little smile never fails to melt my heart! Lina says Nora is "shining" when she smiles:) Nora is moving faster, sitting up longer, and getting stronger every day-her therapists said they are amazed at how well she is doing. We are so grateful for Nora's progress. Psalm 105 says, "Give thanks to the Lord, call on his name! Make known his accomplishments among the nations and tell about his miraculous deeds!...Seek the Lord and the strength he gives. Seek His presence continually" I think what God has done with Nora is pretty miraculous, and I don't know what I would do without His strength!
Thank you again for praying for Nora and being a part of this journey with us!

Nora maxing out her leash:)

6 months

It's only taken me six months to get this up-hopefully it won't be that long before the next update:)
I intend to eventually start at the beginning, but I am going to start at the present because it has taken me 3 days just to write this:)
It is really helpful for me to read the blogs of others that are going through similar situations. I have been in contact with a couple other families who are further along in their journey, and it has been so encouraging. If someone dealing with these issues happens to be reading this, we would love to hear from you!
I'm assuming most people that will read this already know what has been going on, but just in case, a quick back story...
Sweet little Nora was born 11/19/13 with a rare lymphatic malformation. She has cysts inside the mass on her face, in her tongue, on her lungs and around her airway. Because of all that fun stuff she has a trach and a G-tube. We didn't know if she would survive delivery, but God is good, and (obviously;) she did! After 6 weeks in the NICU she was able to come home. It has been an adjustment, to say the least, but I think we are finally getting settled into our new normal:)
Nora has been doing pretty good lately. She was in and out of the hospital the month of March and beginning of April, but has been home since Easter. Currently, we are dealing with her tongue being very swollen and bleeding frequently. She started an oral steroid a week ago (which usually takes care of her tongue issues) but we haven't noticed any change. We started an antibiotic today (in addition to the steroid) to see if that helps. It doesn't seem to hurt her, thankfully, but it's not nice to see my sweet little baby covered in blood! But she smiles through it all:)
Developmentally she is doing great. She is right where she is supposed to be on most things. She is starting to move now, which will be a challenge! She has about 4 feet of tubing keeping her tethered to an IV pole, which doesn't give her much wiggle room. Hopefully she will start tolerating the HME for longer periods of time so she can have a little more freedom.  (The HME (also called the artificial nose:) is a little thing that goes on the end of the trach that traps the moisture and allows her to be off the humidification, but it is more difficult to breath while it's on)
We have been talking with many different doctors as we try to decide the best treatment plan for Nora. We sent her information to doctors all over the country, and are in the process of reviewing their recommendations.
It doesn't seem like the cysts have responded to the sclerotherapy treatments (I think she has had 5 rounds of sclerotherapy? That is where they drain the cysts and then inject them with medication).
There is a drug called Sirolimus (also called Rapamycin) that has been used to treat lymphatic malformations in the past few years. It is usually used for organ transplant patients. Patients with LM's saw a lot of positive results from Sirolimus, and it seemed like that was the only other thing to try, besides surgery (she will definitely need surgery, but from what I understand, it would be more effective if the cysts could be scarred down before removal). We were reluctant to try Sirolimus because of Nora's age. They haven't used it on someone so young, and she wouldn't be able to communicate if she was experiencing side effects.
Despite our reservations, we were getting all set to start the Sirolimus when a Dr from Seattle called. He had good things to say about Sirolimus. He also told us about research that has given them reason to believe that a ketogenic diet could benefit LMs. (A ketogenic diet is most commonly used for patients with seizures)
We are still asking questions and doing research on the diet, but it seems like this may be something we would like to try. It has never been tried on someone with a LM before, so they have no idea if it would actually work. But, in our minds, we feel like even if it doesn't do anything for her, it wouldn't hurt anything to try it. And if it doesn't help, then we can try the Sirolimus.
We have an appointment next week Tuesday to meet with the vascular anomalies team at Children's. We are hoping to come up with a game plan at that time. It doesn't seem like many of the doctors here are too excited about trying the diet. They are concerned about her tongue, and the fact that she is so trach-dependent. I think they feel that since Sirolimus has been proven to help, we should start with that and not waste time. It will be good to hear everyone's thoughts and opinions and see what options we have.
If we do decide to do the diet, that presents some challenges as the Dr is in Seattle. It seems like we would have to go out there several times, and we would need to find doctors and dietitians here that would be willing to work with him long-distance. But we'll cross that bridge if we come to it (Matthew 6:34 Do not worry about tomorrow, each day has enough worries of it's own!)
We really appreciate all of you that have been so faithfully praying for Nora and our family-we can definitely feel your prayers! For those of you that have been asking how to pray specifically, if you would, please pray for wisdom for the doctors and for us as we decide what would be best for Nora.  It is a little overwhelming. No one knows for sure what to do-it's everyone's best guess. But we know God will give us a peace about which choice we should make.  You could also pray that her tongue issues would resolve so we can start working on oral feeding. Lastly, please pray that she continues to stay free from infection!
We are so grateful for how well Nora is doing despite everything. She is a strong little girl! God has already brought her so far, and we are excited to see what He has in store for our little light:)