1:38 PM

Shriners: Part II

Wednesday, June 23, 2010

I know I was supposed to post this yesterday but we got really busy at work and each time I went to update I kept reading about the first part of our trip. You never imagine when you have a child HOW much your world revolves around them. I mean, how many hours did we spend playing with rocks that day? Or watching him play with that darn door stopper? Or letting him roam the halls and explore? And the thing is, most of the time, I wouldn't trade it for those fancy dinners, margaritas, concerts or nights out (before Kaleb)because he makes life worth living. That is something you'll never experience until you have a child. And I thank God every single day that I have a partner who enjoys rocks and door stoppers and hallways just as much as me. (Love you B!)

:: back to the trip ::

We (as in Brian and I) got up bright and early to shower and get stuff ready so we could have plenty of time to eat some breakfast before we got on the road. Thankfully our hotel put up the most amazing hot breakfast and Kaleb enjoyed entertaining the retirees on their golf trip. (He is SUCH a ham!)

Here we are on our way!

Thanks to Char's awesome planning our hotel was about 10 minutes from Shriner's. And thanks to Brian's GPS it was no-fuss and we arrived 20 minutes ahead of schedule. We we're directed to a huge waiting room with lots of other parent's and kids. Of course, the first thing Kaleb went for in the toy room was the Cozy Coupe car.

I had to use the zoom on our camera because he REFUSED to come back to where we were sitting. The kid sure isn't shy!

Did I mention it was the MOST amazing play area I have ever seen!?

The best part of the trip happened in that waiting room. Brian and I talked about it all the way home to Kaleb. He met Ben:

When Ben first noticed Kaleb he said yelled to his mom that Kaleb's hand was, "Like mine! Like mine!" I think my heart melted in that moment. Sure, we know people who have children with hands like Kaleb on facebook or through Helping Hands or Jim Abbott but this was the first time Kaleb has seen anyone his age, in person. We did manage to get the boys together for a few more pictures.

So... my kid was stingy and didn't want to get out of his car.

Are those not two of the sweetest faces you have ever seen?

We sat with Ben's parents for a while and chatted. They are such wonderful people! They adopted Ben from China when he was 19 months old. He's 3 now. It made Brian and I realize that although Kaleb doesn't notice his hand now, he will soon. And that means we move onto a new stage with him on understanding and dealing with being a little different. I think meeting and being in contact with people like Ben will help tremendously.

We even exchanged contact information including blogs (Brian was really excited about this- he has a hard time believing other people blog!) Read about her amazing family here: Our Adoption Blessings or I added them to my blogroll on the side. What an inspiring family!

After meeting Ben & his family we we're off on our next adventure. It included these awesome wagon's to wheel the kids around the hospital in:

We headed off to x-ray. I wasn't allowed back because I am pregnant so Brian and K went back alone. Yikes. I could hear Kaleb screaming in the waiting area and Brian singing, "BOB THE BUILDER!" at the top of his lungs. Ok, so my child HATES being held down. I can understand that. When they emerged Brian was sweating and his face was red. Kaleb was giving the x-ray tech an awful look and his eyes were wet and puffy. If I thought I could get a picture of these two without getting in trouble with them I would have!

We got to be in the Camel room after our xray. We met with a PA who took the works on Kaleb: history, diagnosis, measurements, EVERYTHING. Did I mention Kaleb weighed in just below 37 pounds!? We were told the doc and prosthetic team would be in soon so we did our very best to keep K entertained which included:

Running the halls (Aren't they beautiful?)

We lost our shoes in the wagon!

During our wait we also got to meet the PR director for Shriners. She gets 'google alerts' each time Shriners is mentioned by someone and when I wrote our entry about getting the chance to head down she read it! She even recognized the shirt I took [baby girl's] 25 week picture in because I was wearing it at the hospital. Thank goodness I updated with the date of our trip, she knew exactly where and when to find us. It was such a pleasure to meet her and it was like she already knew us. (At this point Brian is totally in shock because the blog has been mentioned 2 times in an hour- He just might get it now!)

We met with the doctor and prosthetics team soon after. We had been here for 2+ hours and Kaleb was less than compliant and kept trying to escape the room. His stickers managed to keep him entertained while we discussed everything with his doc.

Basically, right now the prosthetics on the market aren't anything worth fitting him for because he would have to take his focus off actually doing something to get his prosthetic to cooperate. She compared it to taking Kaleb's cup and attaching it to our hand. Because we cannot feel where the cup begins and ends kids become frustrated quickly and toss it in the toy box. Also, because Kaleb doesn't need this hand to do anything (unlike missing a leg) it's just a big hastle for him and often leaves the child frustrated. Most parent's chose to fit at this age for purely cosmetic reasons and that is just not us. His hand doesn't bother us one bit.

She explained our best bet is to take the next 2-3 years and figure out what Kaleb is really into hobbies, sports, art or music. Once we know what he really likes doing we can bring him back and see if they have a prothetic or even other devices that can help him play, explore, paint or whatever even better. Sometimes they can help, sometimes they can't.

What I really enjoyed was how they broke down the stages Kaleb will go through with us. What ages he'll ask questions or become frustrated or ask 'Why me?' They gave us a couple of booklets to help with this stuff and they are nice to have around. As far as PT/OT? She doesn't think he'll EVER need it, ever. He's so far advanced and such an explorer that he'll just continue along that path as long as we keep encouraging. If we get stuck on something like when he ties his shoes they will bring us back down and teach Brian and I how to do it and we can teach him (although we already did our research on this and can both tie our shoes one handed). I think it's safe to say we're ahead of the curve. Whew.

The best part for us? The mechanical prosthetics that become options when Kaleb is high school/adult age. They are very heavy right now so it's a no-go for kids but if he wants to be a surgeon or jet engine mechanic or anything he might need two hands for Shriners can fit him for the mechanical one. And who knows what they will have 15 years from now when that time comes? Simply amazing.

And because Kaleb is a lifetime patient we don't ever have to worry.

What an amazing trip. Cannot wait for our next one!

Kaleb is apparently old enough to drive.
His sister will be here in 27 days. Maybe he can drive her home from the hospital!


Jessica Shanks said...

I am so happy that you had such a great experience! Seeing the pictures of Kaleb and Ben almost made me cry. Knowing Kaleb since he was born you almost are blind to his hand, he is such a champ at everything he does. I know having this connection will be so important for him as he gets older. Sounds like you had a fun trip, what a great little get away right before baby girl arrives! Love you guys!

Ericka said...

Awww thanks Jess :) We love you guys too! Kaleb is so lucky to have a friend like Riley (or Wiiiiely- as he says it) and I'm so excited for Shankford/Peterford Volume II! Sooo exciting! Love you guys!