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!