A Long-Overdue Update

Life is whizzing by us and I'm finally now just getting a chance to sort through pictures from the last several months.  So here's a not-so-little update about all that's been going on.

Lexie started her first year of preschool this fall.  She attends a district-run language group with other children with speech delays.  She gets private therapy before preschool each week, then attends her class where they focus on language skills as a group.  Lexie has made HUGE improvements over the last several months and is now considered to be age-appropriate, but she'll continue to receive these services, at least until her next evaluation.  Yay for Lexie!

Our garden was very successful this year!  We decided to try growing cantaloupe since we all love it so much, so Molly was pretty excited when our first (of 13) cantaloupe was ready to eat!  We didn't get to sample many of the other cantaloupes because it got too cold too quickly and most didn't make it.  We're learning that Nebraska summers are way too short for growing some things.  But the cantaloupe we ate were SO good!  Next year we'll probably try starting plants indoors in February with the hopes that we'll be able to enjoy our harvest before the cold fall temperatures hit.

Molly is doing great at school!  She's reading above grade level and enjoys reading to Annie.  I absolutely LOVE watching how Molly and Lexie interact with Annie.  Lexie insists on giving Annie a hug and kiss every morning before Annie leaves for school.  They are such sweet girls to their big sister.

We've been wanting to take the girls camping for a long time now, but with the colder weather settling in and other challenges with Annie (it's hard to use CPAP and a suction machine while camping!), we finally decided to have a camp out in our basement.  We popped popcorn, drank soda, played games in our tent, told scary stories, and put Annie to bed in her room upstairs.  The rest of us then had a very poor nights' sleep in the tent, but it was fun and definitely memorable!  Maybe sometime we'll be able to actually go camping the right way!

The weather then warmed up dramatically at the beginning of October!  The girls have had fun playing outside.  Annie enjoyed her swing so much she feel asleep in it!

We got an early start this year on our pumpkin for Halloween.  We didn't plan to carve it so soon, but that's just what happens when it gets dropped on the way home from the grocery store and cracks.  We knew it wouldn't last long, so we started the carving.  The girls really wanted to carve a cat face, so Justin was excited to get out his dremel.  It's always more fun with a cool tool!

The pumpkin is done and now rotting on our porch in the relative warmth and rain.  This picture of Lexie is significant because yes, she's outside, without sunglasses!  Lexie has suffered from EXTREME light sensitivity for over a year to where she insisted that the bathroom light be off to brush her teeth.  We finally took her to Annie's ophthalmologist and discovered that it wasn't just chronic blepheritis as we originally thought.  She did in fact have blepheritis, but the doctor also discovered that both corneas were completely covered with tons of tiny scratches.  He doesn't know what would cause it, other than a degenerative cornea problem.  She continues to be on steroid and antibiotic ointments and drops and slowly, the scratches are healing.  She still has some scratches, but about 75% fewer than before.  The scratches are causing her vision to be rather blurry, but we'll continue to treat the scratches in hopes that they will completely heal before re-evaluating her vision.  Otherwise Lexie is doing really well!  We've even made progress with her saying her prayers--it wasn't until recently we discovered that Lexie has been saying "The End" instead of "Amen" and the end of her prayers!  With her speech delays, we never noticed until now!

The above picture of Molly is significant too.  Do you see anything missing?!  She lost her first tooth!  It's been SO wiggly in there and finally I asked her if I could feel it and wiggle it, so when she opened her mouth I just ripped out the tooth!  I showed her what was in my hand and she asked, "What is that?"  She was a little confused when I told her it was her tooth!  She eagerly put it under her pillow for the tooth fairy, but as the terrible parents we are, we got busy with projects and totally forgot to have the tooth fairy come!!!  So tonight the tooth fairy will definitely make an appearance and probably leave a note of apology as well!

Annie was having such a great time watching Dad carve the pumpkin that I just couldn't help but snap some pictures of her giggling!  Too bad her hair was all messed up from her nap and her bib is on, but I still cherish every happy picture of her!  I sure love that girl!  And this next picture explains why she still needs her bibs... 

After having a second surgery in Ohio to have her ranula treated (caused by her first surgery in Ohio) her ranula has come right back.  (Her tongue is in the back of her mouth behind the fork handle, the tissue in front of that is the ranula swollen up from the floor of her mouth.)  Because the previous treatment failed, Annie is now scheduled for surgery to have both sublingual glands completely removed, and her submandibular glands tied off.  This was the surgery we were hoping to avoid by going to Ohio in the first place, but there's no getting around it now.  It is an invasive procedure with risks of nicking nerves to the tongue, and it will be very painful.  Most children are in the hospital 5-10 days after this procedure, just for pain management.

We're trying to think optimistically, and consider that about 70% of Annie's submandibulars have already been killed off by her previous procedures, so we'd like to think that Annie won't have as much swelling or pain as other kids when those glands are tied off. (When glands are tied off, the gland continues producing secretions that then get backed up in the gland, causing the gland to swell and cause intense pain until the gland eventually kills itself from all the built-up pressure.)  But this procedure should dramatically improve Annie's quality of life by preventing so much gagging, vomiting, and aspiration risks, and hopefully eliminate the need for all her bibs!

Annie also started with another colitis flare-up around Labor Day.  The GI started her on prednisone quickly which has helped tremendously, and changed her mesalamine drug from Pentasa to Apriso which should work a little better.  But if she has another flare-up within the next 6 months or so, she'll have to start chemotherapy (6MP) and continue on that for probably the rest of her life.  So we continue to pray for her health, and appreciate everyone who thinks of her and prays for her.  She continues to be such a sweet example to me of finding joy and happiness while facing trials--trials that most people don't understand and some that many people aren't even aware of.  I thrive on her smiles and love hearing her giggles!  We're eager to get her through this next surgery and hopefully have an even happier Annie!