Blogging about life in Minnesota, raising our six kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Wednesday, July 24, 2013

Hello Philly!!!

This morning Axel, Asher and I hopped on a plane bound for Philadelphia, PA. The boys have a check up with their spine surgeon at Shriner's Hospital on Thursday.

This is Axel's 2 year post-op check up. Can you believe this is what we were doing 2 years ago in May? I don't know what was worse: seeing him in the halo, knowing the screws were boring into his head, or knowing we had months ahead of us to deal with this contraption! It seems like a long time ago now, and all that is left are eight faint scars on his forehead and the back of his head. The scar on his hip, where they took the bone graft, is nearly invisible.

Asher is also being seen. When he first came home in December 2011, I made sure his AAI screening was one of the first things done. Everything looked find then. Six months later the kids and I were driving to D.C. for the 2012 NDSC conference, a trip which included Axel's one year post op visit. Well, two weeks before the trip, Asher started playing with a clicking sound in his neck, which is the same thing Axel had been doing prior to his surgery. Axel's surgeon was kind enough to squeeze Asher onto the appointment schedule That's when we were told  his was borderline and would need to have precautions in place to prevent injury to his spinal cord.

I should have started buying lottery tickets right then.

Asher can do some interesting things with his neck. We call this "taco neck". To see it in person makes people squirm. Just try putting your ear below and behind your shoulder like that!
Asher, spring 2012- taco neck

There is a theory that Asher's first screening done when he got home was not accurate because his bone age was significantly delayed due to malnutrition, so there wasn't enough calcifications on the bones for it to be seen. 6 months later, after rapid catch-up growth and good nutrition it showed up. He's grown A LOT in the last year, so I'm really anxious to see what his new X-rays show.

Here's the horrible part. I would rather them tell me it's time to do a fusion than deal with him being on restrictions forever. This kid is BUSY, a climber and frequent faller. I have 10 near heart attacks per day. Axel's AAI was much more obvious and left no doubt that he'd need surgery.

I will update more on Thursday after our visit.

 Every time we come out here (and I think this is 5th or 6th trip) we don't have time to see or do anything fun in Philadelphia. This time we're going to hang out a couple extra days. Friday and Saturday are scheduled to be some really fun days with lots of friends.  I can't wait!


Line-Marie said...

Have fun and enjoy!!

I hope all is well with Asher's neck and with Axel's follow up!!

Becca said...

I hope everything turns out well! Enjoy your visit to Philly - it's one of my favorite cities and I can't wait to go back!

Anna said...

Have a safe trip! Hoping for good news - whatever that needs to be for you.