Saturday, April 7, 2012


It's been a very long several days. We've been watching Megan's son Bali a lot and he came down with a respiratory infection. We caught it before he was diagnosed, so we've all been pretty miserable. On Thursday Gabriel and I went to the clinic. They refilled my inhaler and gave Gabriel steroids for his lungs. He also has an ear infection so he got antibiotics for that as well. Thankfully that took care of the fevers, but his cough got worse. This morning I took Gabriel to the ER and they did a chest x-ray, RSV test and monitored him for a bit. They ended up giving him an inhaler too and sent us home. Such a relief! I'm not ready to be in the hospital again. Even visiting Bali, who had to be admitted due to dehydration, was tough. I was holding Bali and Gabriel, and it just reminded me of how much I miss cuddling in the hospital.
He was happy to have visitors. We stayed for 4 hours on Friday and 2 hours Thursday evening. I didn't bring the boys on Thurs because I wanted to give her a break to go home and get some things she forgot.
 The inhaler we got. I was trying to explain it to people so just decided to take a pic. The inhaler goes at the end and the chamber allows it to form gas and be breathed in, since they don't understand to inhale and hold their breath.
 Starting to look like a pharmacy here again.
 Sleepy baby. He slept about half the day. This is really wiping him out. When he's not sleeping, he's usually cuddling, but he was walking around, smiling and giggling for a while. It cracks me up about the pillow. He likes sleeping with his head up against something. It was the crib rail. So I put a super thin pillow in his crib, so now he sleeps against that. At least it's soft. :)
 Dawson's reward page we use. His therapist made it and he finally understands the cause-effect thing better. So he knows that once he gets all his cars on the page, he can have his reward. Sometimes we work for a treat, or to play something specific, computer break, movie, etc. He gets cars for doing good things. Being nice to Gabriel, listening to a direction. It depends on the day, how difficult he's being. On harder days he'll get one just for coming to me when I ask him to. That gets his mindset excited about getting that reward and sometimes gets him a little more agreeable. We took this with us to Target and he even held my hand willingly in the parking lot. That has never happened! They are going to give me a smaller one to travel with so I don't have to bring along a big folder.
 2 good buddies playing in the toyroom

We are stuck at home over Easter because of our respiratory infections. My mind has also been on last Easter. It was the day we packed up and headed to the cities. We stopped and did Easter at my Grandma's house on the way there, then continued to a hotel near Children's so we could be in town to get admitted in the morning. Being a year past the beginning of the end is causing more anxiety. So many memories and so many dates that will always stand out to us.

Our last year's Easter pics. Tyler cuddling with Daddy at bedtime. He looks so little!
 Watching cars out the window. I forget he had so much hair!
Today at the ER I had an interesting experience. The pulse ox is a picky monitor sometimes. It has to be tight around the finger or toe to pick up a reading. Gabriel had it on for monitoring his oxygen level and heartrate. It was being picky and kept losing signal. I was happy to finally be told we could leave so we could take it off. I put Gabriel in the stroller and was packing up our other stuff. Suddenly the monitor started beeping again. Nobody was near it. It picked up a normal heartrate and 100% oxygen. After about 20 seconds it cut off. We walked out and saw a bald boy wearing the green cancer mask. It was hard seeing that reminder of our old life. I miss it. Mostly the little bald boy.

I got a text from a friend tonight who said she was talking to someone and out of the blue she said Tyler is ok. She had no clue where that came from or why she said it, but she just had to tell me. I found it ironic since the mysterious monitor this morning showed perfect stats. So I'm trying to concentrate on the fact that he is ok, and he will never suffer again. I just wish we didn't have to suffer so much missing him.

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