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!"

Saturday, July 02, 2011

Philly Update

On Weds Axel and I boarded a plane for Philadelphia again. This time the plane actually took off! Going through the airport was really interesting. We had a backpack, a roller back, the wheelchair we had to bring back to Shriners (which Axel was sitting in since he needs to be in a wheelchair for long walks in big crowds, like around the airport) and also a walker that needed to go back as well. All with one mom pushing or pulling the various items.

The first step is going through security. I am becoming less and less patient with TSA. They're either a pain in the neck and useless, or TOO helpful, which is also a pain. LOL I wish there were a happy medium! Having been on 23 flights in the past 15 months, I have become an expert at packing to go through security checkpoints. I wear slip-on shoes, no belts (learned that mistake a year ago. LOL) no jewelry, nothing in my pockets, and NO liquids if I can help it.

So Axel and I get to security at the Minneapolis airport, and I quickly disperse the items that need to go through the xray machine. For Axel and I, that meant 4 bins, plus the walker (it fits through the machine!) and a backpack. Then they take Axel through, and I have to go through the metal detector. I learned after our trip on May to ask if they could please wait to check Axel until I had collected my things and could focus all my attention there instead of trying to watch him AND my belongings at the same time. They said sure! In the seconds it took me to ask that, someone (I think a TSA agent) had unfolded the walker for Axel to use. THANK YOU! Except that we don't need it since he's in a wheelchair AND I don't know how to unfold it. LOL Someone else had shifted my things around, moving all the tubs into one pile, except that my laptop was in one of them...on the bottom...making it look empty. Anyway, I quickly shoved things into their appropriate places and lugged everything over to where Axel and a TSA agent were waiting. They checked him over, I put his shoes back on, and we were on our way.

We arrived to our gate at.the.far.end.of.the.airport with 30 minutes to spare before boarding. SCORE!!! I was sitting there sweating to death from the long walk, when I had a thought. "Did I get the laptop?" As I though that, an announcement came over the loud speaker. "Would the traveler who left a laptop at security station D please return for it." I unzipped the backpack...nope. No laptop.


I asked the gate agent if I could leave the roller bag and backpack there while I RAN back to the other end of the airport. No dice!!!! Axel and I made the trip VERY fast, and arrived back at the gate, dripping with sweat, just as they were ready to pre-board Axel and I.

My good friend Colleen picked us up at the airport. I cannot thank her enough for the immense amount of help she's been to us the three times we've been to Philly so far. From picking us up at the airport to driving us to Ronald McDonald house. This time we stayed with her, and she dropped us off at the clinic Thursday morning on her way to work, THEN had to drop her little guy Nolan off and get herself to work. She has really gone out of her way for us, and we can't thank her enough!

So the clinic visit: It was GREAT!!! I really didn't have a way to explain to Axel where we were going on this trip. It was really cute when we pulled up in front of the clinic, and he touched his halo and started jabbering. I'm sure he thought he was here for another traumatic event, and that we'd duped him into it!

 First, we checked in, and ran into Axel's surgeon, Dr. Samdani. He was really pleased to see how well Axel is getting around! Next went to the physical therapy department and got rid of the bulky wheelchair and walker. We have another wheelchair we had left with them in May that we'd be bringing home with us. It's a little too small for Axel now (it fit him just right in February!) but was good enough to get us home. Still, it was really nice to not have to be dragging the bulky stuff around!

Next we went to Xray where Axel had new pictures taken of his neck. I was anxious to see the new bone growth!

That done, we headed to the clinic to meet up with Axel's surgical team. They were all thrilled to see how well Axel was doing, AND how wonderful his pins look! You may remember that a few weeks ago Axel's pins were badly infected. I have to clarify something here. These "pins" are actually 1/4 inch SCREWS that are screwed 1/8 inch into Axel's skull,  and each screw has 8 lbs per square inch on the skull.  They NEVER come out except when the neurosurgeon removes them to take the halo off. That means Axel has not been able to have a bath since his surgery back on May 16th. Anyway, the pins now look great. A combination of 10 days of antibiotics (which ended a couple weeks ago) along with a new cleaning regimen, and things are looking perfect.

So, here is a picture of the computer screen with Axel's xrays displayed on it (you can click on it to make it bigger.) :

See  how long those screws are in his neck? BLECH! See the balls at the head end of the screws? That is actually the bone graft. If you blow it up big, you can see there are shadows in it, and on the picture on the left you can see there are clearly balls of bone. When we go back in 6 weeks they should be grown together into one solid piece of bone.

And, the best news of all? When we go back in six weeks, Axel will be getting his halo off!!!

Actually, if he wasn't head banging in his sleep, he would have gotten it off at this visit, but since he's so rough on his body it's really not advisable right now. That's ok! We're all for erring on the side of caution! When he gets the halo off, he will have no muscle strength to hold up his head, so he'll be in a neck brace just like the one he had before surgery. This will stay on for about another three months.

Axel was pretty relieved to be leaving the clinic without having suffered one single painful event! I can't wait until mid August when I can tell him that he's going to get that thing off! The removal itself is a quick procedure, taking just a few minutes. Even so he will have an I.V. placed, and be sedated for the removal so he....AND THE MOM... are not so traumatized. I've heard from good friends that the halo removal is NOT FUN, so I'm glad they said he'd be sedated.

I love this picture of Axel looking at his xrays on the computer monitor. I don't remember who this guy is. He's not Axel's surgeon, but he participated in the surgery. He's a very nice man, and had lots of questions for me about how I'm caring for Axel's pins, etc. Also, they haven't gotten many kids with DS who have active impingement of their spinal cord at the time of surgery, so he wanted to know if they could use Axel's xrays for teaching purposes.

So, if we're really lucky, we'll have no reason to contact Axel's surgeon before our appointment in August. And if we get our way, we'll have that halo off before Axel's birthday on August 13th. What a present for his first birthday in America!!!!


Tamara said...

Great update, Leah. Hope he continues to do well. Would love to know what he was saying when he realized where you were ... :-)

Stephanie @ Ralphcrew said...

I'm worn out after reading about your airport adventures! Glad that he is doing so well. :)

Marianne said...

I bet August can't come soon enough!

Smilen Champ said...

My name is Jenna and i came across your site. Axel is an amazing, courageous, strong and determined fighter. She is a brave warrior, smilen champ and an inspirational hero. I was born with a rare life threatening disease, and developmental delays. I love it when people sign my geustbook.