by Courtney Kruse | Jul 29, 2015 | Blog Posts
There are questions without answers.
People often describe an experience as being “rollercoaster.” Noah has been nothing but a rollercoaster. Not the smooth kinetic kind that we grin through. He is Space Mountain. Blackness interrupted by strobe lights that leave spots in your eyes, piercing shrieks, shocking twists that pop your neck. As the car rolls into the gate (head spinning, stomach swirling), and we prepare to stumble away and sigh relief. The seat belts stay latched, and we ride again.
It’s not all bad. I wouldn’t want to ride that rollercoaster with anyone else.
Before all this went down 2 weeks ago, Noah revealed a dozen big and little milestones all at once. This is the disney experience I wanted! I jotted them down just so they can smile at me next to my pjs in the closet, and I can smile back with a prayer of thankfulness. It helps maintain perspective of progress, in spite of the wearying work.
The BEST thing he is doing is LOOKING at me. Not just looking, but looking at me and smiling! I had wondered about his eyesight or if he is autistic. Now he delights in being played with, while previously he didn’t seem to care! He seems more like a typical baby now, and we are all enjoying how FUN he is!
This is my happy little illegible list.
I have never had a kid change so much in just a few days!
Regardless of how dark scary his health is, or sunshiny bright Noah’s development is, God’s strength and goodness is my rest and praise.
In the day when I cried out, You answered me, and made me bold with strength in my soul. Psalm 138:3
So I hold tight to my sweet boy, and try to enjoy the ride.
by Courtney Kruse | Jul 28, 2015 | Blog Posts
Testing leads to more testing.
Last week Noah had some disappointing appointments. He failed his first hearing test after surgery, and it seems his tubes are clogged or fallen out. Already. His ENT wants to replace them. His oxygen saturations have been fluctuating between being great, and worse than before surgery. His doctor picked up her phone and scheduled a sleep study for Sunday night.
We survived the sleep study, and the results were good! She said they were so good, we wouldn’t have to use oxygen!!! This is what we were waiting for, right?! Skeptic mom here. A few nights ago, I had to have him on almost a liter to keep his sats up. Noah had a good night in the sleep center. He will have a home study next week, just to rest this momma’s mind.
The study also showed some prolonged “obstructive events” that seem to be affected by the position he was sleeping in. Maybe this explains his bad nights?
The chest x-ray was cloudy.
He had an echocardiogram today to see if his heart is involved. He has an appointment on Thurs with cardiology– a different doctor this time. (Last fall we saw a doctor who was hard of hearing (and maybe in denial). He couldn’t hear my voice, but listened to my baby’s heart tones. He said he didn’t need further testing, because it sounded like the holes had closed. Nice guy, but I want someone who can hear well to listen to my son’s heart.)
Next week Monday he is scheduled for surgery for new tubes, a bronchoscopy (look at his airway), and an overnight ph test to see if there is reflux in his lungs. So we get to do more days at St. Mary’s.
Sleep study = very little sleep for mom.
More on bated thanksgiving later.
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