From Now On

Typical scene at our house ;)

Onesies Grandpa Whitworth brought us from Paris

Rex bundled up for a January walk

Ellie bundled up for a walk

Ellie's ER trip 

Eleanor 

Rex 

Doctor's appointments wear Rex out 

Loving some one on one time with Rex (AKA more doctor's appointments)

Charlie and I got to go see The Greatest Showman last weekend and get dinner. It was so so needed. I can't get over the music and one line from one song keeps replaying in my head.

"From now on
These eyes will not be blinded by the lights
From now on
What's waited till tomorrow starts tonight."

I think that sometimes in life we are blinded by what we want. We get so caught up in chasing what we think will make us happy, that we overlook things we already have in the pursuit of more.

How sad is it if I let my old expectations cloud the reality of what my life really is? If I spend all my energy wishing and wanting Rex to not have cerebral palsy, what's left to celebrate and embrace the beautiful life he does have? I don't want to miss out on celebrating that he can breathe on his own. His little heart keeps beating every minute of every day. His vision is improving just a little bit. He is so happy, he knows my voice and my touch.

I want to get rid of my expectations and my limitations. Cerebral palsy can be such a wide spectrum of severity and we don't know to what degree it will affect Rex yet. I don't want to set up expectations of what his life will be like because chances are my guess is going to be wrong. So I'm getting rid of expectations. People who have cerebral palsy can also do so many things and progress in ways that don't line up with the brain damage they have. If I don't believe in Rex and his ability to overcome any obstacles he might have, then how will he learn to believe in himself? So I'm getting rid of limitations too.

If there is one thing I have learned in life so far it's that things will always change. I don't get to pick what happens but I do get to pick how I deal with it. I want my kids to know that they already have everything they need, a family who loves them, and two parents who would do anything for them.

"For years and years I chased their cheers
The crazy speed of always wanting more
But when I stop and see you here
I remember who all this was for."

Also this was written at one am so if it's too cheesy for you or if it makes zero sense you know why :)

And here is a mini medical update:

We met with Rex's GI doctor last week. I fully expected her to schedule him for a g-tube, but she wants to get the reflux under control and do a month more of speech therapy before we make the call. So we bought a crib wedge to raise the head of his bed, we are running his feeds over 45 minutes instead of 15, and making sure he is hardly ever flat on the ground (which makes PT difficult). He hasn't vomited too much lately which is good progress.  The NG tube hasn't been super hard to manage and I am extremely grateful that he can still be fed. Every time we feed him we first have to pull back on the tube to see if it is still in his stomach, you know if it is if you get some yummy half digested milk and stomach juice in your syringe. Last Thursday night in the middle of the night we stopped getting stomach juice back and had to pull out his tube and repack it. I was anxious because I've never done it without a nurse nearby and he hates having it replaced. But I actually rocked it and got it down on the first try! I would say I"m not trying to brag but I was really really proud of myself for overcoming one of my fears. At our last pediatrician appointment he had been growing decently. We go back again today so I hope it is the same. The GI doctor has different recommendations about weight gain and growth than our pediatrician does which is kind of confusing to me, but every practitioner is different and we just have to decide what is best for Rex.

Ellie has been the pickiest eater recently and I was starting to worry that she was headed down the same path as Rex. I still don't know if I should try and get her into speech therapy too, sometimes she just totally refuses her bottle but then when she does want to eat she does the whole thing and is very coordinated. I think she is fine, she is just a very opinionated and passionate little girl. She got a new prescription to try and treat the thrush that she has had for over a month, and the day we gave it to her she broke out in a huge rash all over her body that landed us in the ER. They called it drug eruption and sent us home. We stopped her breathing treatments (steroids) because one of the side effects is thrush. She has been loving spending some quality time with Grandma Young while Rex and I have been going to speech therapy and a few appointments up at Primary Children's.

The kids started sleeping in their own room this week. I was super anxious the first night and spent the first part of the night on their floor until I realized that they were fine and I was uncomfortable. Hopefully now we can get them to bed earlier and we can all get more sleep. Although we have had a lot of changes with feeding schedules so if they are in bed by 10 pm I'm getting up with them twice before 7 am.

The best thing is that we still are not sick at the Young household and we plan to keep it that way. One of Rex and Ellie's cousins currently has RSV and the other has croup. Needless to say that is our worst nightmare and I am feeling very content to just stay home and away from basically everyone.