Shriner's Update

Today was our appointment at Shriner's Hospital.

It was Axel's 2 year post-op follow up. He is doing just great and the surgeon is pleased.

Asher had his c-spine and then full-spine X-rays. He has horrible kyphosis but it is completely positional and not something we need to worry about for now. His AAI is...well...not really AAI.

AAI is movement between the C1 and C1 vertebrae. Last year Asher's was borderline, but now it looks fine, measuring at 4mm which is within normal ranges.

And then there is AOI. That is the movement between the Occipital (the head) and C1. That measurement needs to be under 10 mm, and anything over that needs to be fused. Ashers measures 8.5-9mm. Most kids don't get worse after age 8, but Asher has delayed bone development. So, we're going to recheck him in 2 years and see where it's at. For now he has no restrictions. YAY!

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!

We're Here!

Other than an interesting landing --the kind where the plane is almost ready to touch down and it suddenly pulls up to a steep incline then makes a sharp-banked turn--the flight was uneventful. Oh, well and Dean kind of left me in security with four bags, two kids and one wheelchair, but we're all good. ;-) (he didn't know than when a security agent is rushing him along he can say, "You'll have to wait, I'm helping my wife and kids get all their clothing of, electronics out of bags, and everything sent through the scanner!" Next time sweetie.

Our flight landed at 2:00, and we waited to be last off the plane since they would be brining Axel's wheelchair from the planes belly anyway. So we finally get to the jetway and wait...and wait...and wait some more for the chair. Finally we decided that Dean and Angela would head to baggage claim and Axel and I would catch up to them.

So Axel and I waited.....and waited...and waited some more. There was another guy on the plane who was waiting for his electric wheelchair which wasn't showing up either. Finally the flight crew was making phone calls, and a guy brought us an airport wheelchair. "No. Where is OUR wheelchair? Can't miss it, since it's covered with American flags."

Hmmmm

After a good 20 minutes they realized that both our and the other guy's chair had been sent to baggage claim by mistake, so we waited for them to bring them back to us then made the loooooooooong walk to find Dean and Angela. Can I just say, I am *so* glad we bought this chair for Axel? It is a life-saver during long walks through airports, and will be completely necessary after his surgery.

My friend Colleen picked us up and brought us to Ronald McDonald House. (Front & Erie street for anyone who's wondering.) By the time we got settled and everything it was 5:00 so we decided to head to the room for a little rest. (don't say "nap" to Angela!) Angela and I both slept, Axel rested playing with my hand, and Dean watched TV.

At 6:00 we went down to dinner, then got a surprise for the kids. There is a great game room here pool table, ping pong, air hockey, fooseball...you name it. Angela loves airhockey and we knew Axel would here so we showed them the table. The played for about an hour and thoroughly enjoyed it!

While they were playing Dean and I chatted with a young couple who just had their first baby two months ago via in-vitro fertilization.  He was born with a tracheal-esophageal fistula along with amniotic banding syndrome, and just had a gtube put in not too long ago. They'll be bringing their baby home for the first time next week, and are quite nervous about the whole gtube thing. I remember that feeling SO WELL! I was able to give them a few ideas about how to deal with the tube to keep it safe (he still has the foley in and won't git a mic-key for a  month or more.) and just give them some general assurance that the tube really will be no big deal once they're used to it, and that when they get home they can finally get on with learning all about living with a new baby...their firstborn...and loving on him without the interference of hospital staff!

We finally brought the kids back to the room about 9:00, had baths and got the two of them...and myself...tucked into bed. ;-)

Today is a big day.

We are here!

WE arrived safely and without any unusual events. Axel enjoyed the flight, particularly the take-off and landing. ;-)

When we left Serbia it was snowing and cloud, and the de-icing stuff covered the window so he couldn't see out. He really had no idea we'd left the ground. Today he enjoyed the pretzels, and the pop, and the iPad while Mama dozed off and on. He was a little worried about the tears running down my face during the plane's decent.

Let's just say as soon as I know when Axel's surgery is, I'm scheduling to have MY surgery for my ear tubes to be re-done. The last 45 minutes of a flight is excruciating. And I still can't hear well.

My friend Colleen and her son Nolan picked us up from the airport, and we were able to enjoy dinner together! What fun to get to know someone I've known online for years! We  met on downsyn, my internet "home" for the past 5 years or so.

We're all checked into the Ronald McDonald house, and have Skyped with Papa and Angela. Tomorrow's appointment with the surgeon is at 1:00 (12:00 pm at home) and you KNOW I'll be updating after that!

Thanks for your prayers everyone.

Headed Out

Ok, I think I have all the documents I need for this trip, stuff to keep Axel (and me) busy on the the plane. Laundry done so if Dean and Angela have to join us out in Philly he can easily pack a bag for them.

Next post from Philadelphia. Oh, I'm so anxious to get this visit done!

To All My Philly Peeps

Axel and I will be in Philly next week. We'll arrive late afternoon on the 16th and have that evening open, clinic on Thursday the 17th, then Thursday evening will be open for socializing as well. We are scheduled to fly home on Friday morning, but that is subject to change.

We would love to meet up with some of you! I don't know the area at all, of course, and I'm still waiting to figure out where we're staying. (trying to get a room at Ronald McDonald house since it's nice and close...and cheap.) A couple people have offered to let us stay with them I just don't know how close anyone is to Shriner Children's Hospital. I prefer to be close where I don't have to worry about traffic.

When Axel has his surgery Dean and Angela will be coming out as well, and Dean and I will take turns in the ICU. I think. I really don't know WHAT we're doing and am working on plans B, C and D. LOL

Confirmed

Axel's appointment with the doctors at Shriners was confirmed for next week on Thursday the 17th. That seems like forever away when we're trying to keep his neck safe!

Thank you so much everyone for your prayers for Axel!

Dates and Hair

We have a tentative appointment date in Philadelphia for next week on Thursday (2/17/11). I'm just waiting for the phone call to say it's confirmed and to go ahead and book flights.

Axel's hair has been growing really fast. I love it! I could see a little Justin Beeber-type style growing out. Still, he needed a little trim around the ears. Nothing much, just a trim.

I SWEAR on a stack of bibles I was only trying to trim it. Just a little. I used to cut my boys' hair all the time, and they even looked decent. In fact, for a long time Noah refused to let anyone but me cut his hair.

Apparently I'm out of practice.

Eventually the only thing left to do...was....well you know....Fix it.

His Papa will not be happy with me.

And then, my tactilely defensive prince put his hand on top of his head, gave it a rub, and gagged. I would too if I were him.

When to wear the brace

The Dr. from Shriner's originally told us Axel only needed to wear his brace when he's awake. Except that he doesn't know how Axel sleeps!

Axel often sleeps with his head hanging off the bed, and just as often falls out of bed. Sometimes I find him standing with his feet on the floor and his head on the bed, like he's been walking around, or fell off and didn't quite make it back before falling asleep again. When he does stay on the bed, he almost always sleeps with his neck hyper-extended, something we now know is very dangerous for him! Funny how what was fine one day totally freaks us out the next.

Dean and I made the decision that Axel would have to wear his brace to bed too. We also put his mattress on the floor. Ok, really his bed broke about a week ago and we hadn't bought a new frame yet, so we're just leaving the mattress on the floor. LOL So, if he does fall off the bed, he's only going a few inches with his neck protected.

Or is it?

This is Axel getting ready to hang his head off the bed. About where the bottom edge of the picture is, that's where the edge of the bed is. One more scoot and he'll be in his favorite position.

Fifteen minutes after taking the first picture, I found him in this position. Notice even with the brace on he's trying to hyper-extend his neck.

This morning when I woke him up for church he was doing his head bob thing (kind of like banging but he ONLY does it while asleep) on his pillow with the side of his head. While wearing the brace. No clue how he managed THAT!