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