Saturday, May 30, 2015

One more time...

So we met with the nephrologist who was very positive overall. The dilation in his right kidney is still grade 2, but vastly improved from what it was back in January.  She's not concerned with that one at all. His left kidney was downgraded from a 3 to a 2, but is much more obvious on the ultrasound that the right. I could even plainly see the difference. 

So she wants us to do another scan in 6 months and make sure it's continuing to improve. She seemed confident that it would be, but also cautioned that persistent dilation could start to impact how his kidneys grown & develop. It doesn't seem to be doing that now as they grew appropriately for the 3 months between scans. 

We also met with our Craniofacial Pediatrician who is also a geneticist. The last time we were up there, he had blood drawn and we began genetic testing to look for any indication of what may have caused his craniosynostosis, kidney problems, respiratory infections, ptosis, or blepharophymosis. She had our results back & everything was normal! PTL! Granted, this was a fairly limited test, but it was good news regardless. 

The Children's Hospital in Philadelphia is doing a research study that allows us to get additional testing without trying to fight our insurance company for approval, which they almost never give for this type of testing. So we figured we might as well go for it since they can use his previously banked DNA & we feel that in this instance, knowledge is power. It generally takes about 6 months to get those results back so we will see her the same time as Dr. Hanevold. 

She did say that she is very pleased with Arron's development. While he is slightly behind in motor skills, it generally doesn't mean anything in the long run. His cognitive development is right on track & is a much better indicator of his future development. So that was also encouraging. As a first time mom, you worry about everything your baby does (or doesn't do) and if it's on time or not. So her bringing that up unprompted really did a lot for me. :-) 

We appreciate your continued prayers for improvement in his kidneys & happy follow up appointments. Craniofacial still has a few things they're following related to his skull shape to make sure it doesn't interfere with his hearing or swallowing. 

Wednesday, May 27, 2015

In Seattle

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

Friday, May 15, 2015

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!

Thursday, May 14, 2015

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 here it is now. 

Saturday, May 2, 2015

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.