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