The Beauty of Routine

*Play song, "Ordinary Miracle" with this post

First off, I would just like to thank all of you that responded to my "heart on my sleeve" post. Whether it was commenting on the link from Facebook, sending me messages or emails, talking to me in person, or commenting on the post itself. I read your own stories. I listened to how you sympathized with what I was feeling. Not one of you tried to make me feel anything other than valid for what I felt, and I can't thank you enough for that. And just so you all know, the bracelet came off, last night.

Now, a lot of you have wondered how things have been going since Em has been home, and I'm here to say, that's what this post is all about.

We had a lot of great things happen:

We got shown love from friends

Busy ball from the Wolf family 

Shamu from the Soileau family

Gift basket from my Relief Society presidency

We made messes

A lot of messes

and tried to be sneaky about it all

Caught!

We went to doctor visits and were told that our child is a "true walking miracle"...... "even though she doesn't walk". That was Em's beloved pediatrician, who also stated that she's in the best health he's seen her in, in over a year, and that he was unbelievably amazed at overall how she was doing. This was 11 days after the initial scare and emergency run to Primary. 10 days after she became symptomatic with RSV. 9 days after she was placed in the PICU and put on a C-Pap. And 3 days after she was discharged from the hospital. She is amazing. Beyond my wildest dreams amazing. Hard to put into words, but best I can say, is amazing work of faith, power, God, love, everything.

We also had a visit with the eye doctor where we learned that Em's eyesight is improving. Not improvement enough to ditch the glasses (which I was happy about, I like her in glasses, if you couldn't tell from the last post). But improvements are improvements, and these days we're taking them all.

We also came to some hard decisions that utterly affect the well-being of our girl. Biggest one being to keep her away from other kids until her surgery tentatively scheduled for the middle of April. 

We purchased (well insurance did) a pulse oximeter. Which, if possible, has maybe even made us even more paranoid than we were before with the way we can see her heart-rate bouncing all over the place (as much as 60 points in a matter of seconds). Which in turn has made us return to routine specialist visits that we had kind of stop concerning ourselves with in the last year or so. 

We tried perfecting the art of self photography.... only to fail miserably most of the time!

Finally!

We showed the house a couple times, so we cleaned like crazy!

Mostly we just have enjoyed being together at home, whole and happy.

Playing with daddy

Yes, this picture was seen already, but I just love it so much!

Things have somewhat gone back to normal, and actually better than normal. It's weird how when you are so use to getting restless sleep, that you actually are more tired when you get the first few nights of the best sleep you've had in years. Emarie for the first time in well over two years, has been sleeping mostly through the night (which might be why she refuses to take naps at grandma's house during the day). Thanks in part (mostly) to the fact that she actually is keeping her oxygen cannula in her little nose. Yes, that was quite the battle before the hospital stay, which leads me to the reason for the blog title.

The Beauty of Routine

It's amazing how many things can become routine for a sweet little 3 year old. 

Hospital ones

Blood draws, IV placements, constant strangers, surgeries..... etc

Home ones

Her daily injections for growth hormone (actually laughs when given these). G-tube button changes (mommy and daddy still can't get use to these though). Keeping her glasses on. Giving of breathing treatments, via nebulizer or inhaler through spacer. Countless medications....

as sad as this is, I think it is so stinkin cute that she has a fish on her face!

The ones I thought would never become routine for her

Brushing her teeth and keeping her on oxygen at night... well, one has now become routine, but I'm not planning on the other to ever become routine..... funny how much this child goes through, yet brushing her teeth, you'd think we were killing her ;)

We were told to keep Em on oxygen when they discharged her after her hip surgery back in July. We were given a huge and horribly loud machine, nasal cannulas and tender grips.... all of which Emarie detested. We tried everything, from trying to distract her while we placed it, to waiting until she was sound asleep.... all to no avail. Well, sometimes she would leave it on for all about ten minutes, but we gave up all together after awhile because it was too much of a battle. This hospital stay completely changed that. And I think it changed Emarie's aspect on that as well.... like she knows now that it's helping her. Just like her breathing meds, her glasses, and everything.... well, except brushing her teeth. 

As sad as some of it is, I still can't stress enough how much I appreciate when things become routine.