Sunday, March 15, 2015

Life Never Slows

Just like always, things are exceptionally busy here at the Scarbrough House.  The last two years of my life often seem like some sort of dream.  Sometimes good and sometimes bad.  But I guess when things are moving so fast, you don't really have to much time to dwell on the sucky stuff.
I guess it's a good thing these two still periodically slow down.  I don't think I will ever tire of waking up to these sweet faces.  Even when they do kick me out of my own bed way too early in the morning. 

Ben's mom was able to come and visit President's Day weekend...also Valentine's Day weekend.  We learned on Valentine's Day that Nolan is most certainly sensitive or allergic to blue food dye after having a blue Gatorade and blue Icee and then vomiting all over the floor minutes before we were supposed to leave for a date.  So I've been making a lot of attempts to check labels and really limit all dyes he is injesting.  We have also added one fresh fruit to his dinner meal.  We had really fallen off the fresh fruit and veggie train lately opting for packaged stuff.  It was a challenge but he does really like bosc pears and mango even if he would never let us know. 

The weekend after President's Day Ben and I got hit with the good ol' norovirus.  It took us out for days.  And by took us out, I really just mean, made things a lot harder.  Because the kids were fine and firing on all cylinders.  For the week, I lived on rice, hot mint tea, bananas and 231 popsicles.  And if I never get that virus again, I will be beyond thrilled.

The following weekend, we had our neighborhood Wine and Cheese Social.  It was fun to get dressed up and have real conversations without being interuppted a half dozen times...during one sentence.

Look, real clothes!  It's always nice to get in the closet and find something fun that you haven't been able to wear in the past year.  Because you have no social life.
Prior that same week, we got a phone call from Allyn's geneticist.  Her muscle biopsy came back with some issues.  Her mitochondria are abnormally shaped on the EM.  This leads us to believe that she most likely has mitochondrial disease which totally sucks.  But right now we don't have an official diagnosis.  She has two systems being affected:  neuromuscular and digestive.  For an official clear diagnosis, they want three systems.  Additionally, all of her bloodwork has come back normal to date.  So thrown into the mix, we added another clinic to our ever expanding rotation.
 Another trip to UIC to see neurologists and geneticists and get thrown in a room with a bunch of medical students. 
Everyone looks so thrilled to be there, huh?  And there were four more people in the room:  Ben, Nolan, her geneticist and a genetic counselor.  But seriously, it's always nice to have another set (or 4) of eyes watching things.  Maybe someone will think of something and we'll get all of this figured out.

We have more tests scheduled for the end of March.  We will see an audiologist, have more bloodwork done to check some other markers and have an echocardiogram of her heart.  We saw an opthamologist this week.  And yes, I used to complain when I had to take Nolan in to see our pediatrican for an ear infection.  Was I unbearable or what?

The weekend after our Wine and Cheese Social, we had Nolan's school social.  It was a dinner and live and silent auction.  I kept getting outbid on the kindergarten experience.  I finally just walked away.  I don't think myself or the other main bidder had a limit.  And I just couldn't keep going back and seeing myself outbid by ten freaking dollars.  So we did the wine pull and brought home a bottle of merlot.  I do love our school and was thrilled to get the opportunity to support all of the fun stuff that Home and School does for our kids.
AND.  I got to dress up again.  Woo Hoo.

And the following morning, this little peanut had a lot of opinions about everything.

Most recently, we have just been doing a lot of therapy.  Not that we have any more sessions, but we are able to accomplish a lot more during our time with her and I can see results from working with her in our play time.  Her speech progresses every day.  She has new AFOs and they have helped so much with her walking.  We are still waiting on the pelvic stabilizer for her walker.  And once that is here, I plan on doing as much functional walking as possible. 

 But she has been practicing her functional walk a lot.  We walk into and out of the gym.  To the mailbox and for a bit of the walk to get Nolan at the bus stop.  Love.  Love.  Love.

No comments: