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