In Seattle

We are getting his ultrasound now & then we will meet with his nephrologist after to discuss the results. 

Now to decorate!

Well this helmet fitting went way better than the first one! The first one he SCREAMED the whole time she was messing with it. This time he was a little fussy but nothing crazy & it needed a lot of trimming. It was nearly down over his eyes and his ears were pretty smushed. He was also very ready for a nap by the time we left. But here's the new look: 

So after paying for this helmet we've officially paid our maximum out of pocket expenses for the year and all future appointments/surgeries/medications/hospitalizations for the year are covered at 100%. Woo hoo! Although that means we've already racked up $4,000 in medical bills this year. Some of that was covered by Children's charity care program but the vast majority of the care has been outside Children's having now spent $1,200 on helmets alone. Crazy to me how insurance works that we were responsible for $600 of his $100,000 in bills for the surgery but at the same time pay $600 for each $4,000 helmet. Weird. But we are on the upswing now & hopefully it's good news on the 27th and we are almost out of this chapter of our lives where it feels like we live in Dr offices. 

One more picture for the road. And don't worry, we'll get some Sounders stuff on it soon!

Not impressed.

This pretty much sums up Arron's opinion on sweet potatoes. 

This was from back in March, not sure why it didn't publish...so here it is now. 

On to the second helmet!

Well Arron has outgrown his first helmet. We saw his surgeons 2 weeks ago to confirm that they want him to have another helmet. Then on Tuesday we went for the measurements & scanning at the Hangar Clinic. They submitted everything to Group Health & I got the authorization in the mail yesterday. 

So here we sit, waiting for helmet number two. 

Time is flying!

I can't believe this little guy is six months old!! We are going to try solids for the first time this weekend. He's doing well & his head seems to be rounding out nicely! 

I like his physical therapist a lot, she's great. He's decided she's sneaky & not to be trusted. It's funny to watch him suddenly realize that she's doing a stretch or massaging his neck while he's playing. He's making progress but we still have a long way to go. He's not sitting up yet & because of his head turn & tilt, he's also now setting his hips lopsided so he keeps his eyes level with the horizon. Lots of work to do.

We have his next round of appointments in Seattle on Monday, March 30th. So keep the prayers coming, and wish us luck with the sweet potatoes tonight! 

Ultrasound results

We had Arron's follow up kidney ultrasound on Monday the 9th. 

The nephrologist called me on Wednesday to let me know that while it showed very minimal improvement, his kidneys were still not back to normal. She is hoping that we just didn't wait long enough between scans. So we are getting another scan on Wednesday, May  27 and then seeing the nephrologist immediately after to discuss the results. Hopefully everything will be normal & that will be our only visit with their clinic. 

Otherwise, he's doing well and has started enjoying time in his exersaucer. Even to the point of jumping himself to sleep! 

We started physical therapy and our therapist said he's doing a lot of things well but we still have a lot of work ahead of us in other areas. So keep the prayers coming as we continue on his recovery journey. Thanks!

Helmet day!

I was super nervous about this appointment and how he would react to the helmet. And then he woke up at 6:30, and didn't go back to sleep until about 10:25. He's usually toast after being up for about 2 hours. He got to sleep for about 45 minutes instead of his normal 2 hours and was rudely awoken by having his helmet put on. He screamed. Like, SCREAMED. 

This was the third trimming & he was less pissed, but still mad. 

For anybody that's talked to me about my son, the first thing I say is that he's a very chill baby, and really doesn't cry much, unless there's a legit problem. Today, he was not that baby. He was tired and cranky. And we woke him up. Once the helmet was off for her to go trim it, he settled down pretty quickly. But she had to trim it 4 times before she got the fit she wanted. 

He was so exhausted by the last time she brought it in that he had passed out sitting up. So she got the measurements she needed of his head and we even got the helmet on him while asleep. She snapped the pictures for the surgeons of the fit and said, well normally this is when I have you guys practice putting it on & taking it off, but I understand if you want to skip that since he's sleeping. So we skipped that & just took him home. 

He wore it for almost five & a half hours before he really started getting upset. So I took it off to have a little play time & nurse. He doesn't have to sleep in it all night just yet, but tomorrow I'm going to try to keep him in it most, if not all day. 

Immediately after we got home. 

Having some play time. 

Still a little short for the bouncer...but he will get there!