Monday, January 14, 2013

SB Clinic Day

So we weren't scheduled for a clinic day at Shriners until March but the best part of living 3 minutes away from Shriners is if I freak out about something I can just call! So the past month little Eddie's left foot seemed to turn in. Actually more the shin then the foot but it gives the appearance of his foot turning so far to the right it can sometimes end up flush with the floor. So I mentioned it to his PT who also agreed that it had changed. So I decided to call and make an appointment earlier than March. We headed out to Shriners Friday and we were so lucky that Eddie's PT was able to come with us. I was glad to have her there to help explain everything and thank goodness she came since Eddie couldn't make it and those appointments are hours long and the baby was getting restless. (Well as restless as he ever gets which isn't too much). So after lots of doctors checked him out here's what we came up with.

First the ortho and pt consulted with our pt and decided that instead of his lesion being all sacral they all agree now that it is more like L4L5. All this means is that the nerve damage is a little higher up than they originally thought. A first I'll be honest that it felt like a little blow when I heard this. Then I realized that what we knew of his sensation and muscle damage was exactly what L4L5 looks like. So nothing really changed for us except the fact that we didn't know exactly what sacral meant. From what it sounds like he was born with a small sacral lesion but we knew it was tethered higher up so the thought is that due to detethering some nerve damage was done which is totally normal during detethering. The nerves get stretched and sometimes sensation can be lost. Ugh, sorry for all the medical info.

Now to explain why his leg is turning in. So the nerves to the muscles on the outside and back of his leg don't fire correctly. This in turn makes the inside muscles too tight therefore pulling his leg/foot in. We have continued to work with stretching it but due to my super strong and wiggly little man his muscle is getting super strong. That's why we've seen more pulling. So the solution is a device called the Denis Browne Bar. They are shoes attached to a bar that can be adjusted to an angle to stretch his legs/feet apart. It sounds way worse than it is. It doesn't hurt him and actually isn't that angled for him. He is set for a 45 degree angle which is apparently nothing compared to kids with clubbed feet who can be at a 70 degree angle. He actually looks cute in it and doesn't mind it at all. I think he actually likes it since it helps him get on all fours! The worst thing about it is while putting it on I almost always get whacked in the face. When I do and I will I'm going to have a big bruise! So don't be alarmed if I'm walking around with a black eye. He only wears it when he sleeps at nap time and bed time.

Next we got fitted for AFO's (ankle foot orthotics) these will help keep his feet at more of a 90 degree angle when standing. Now his feet pull up so he stands on his heels. Due to lack of nerves to his heel cords this will stay this way and won't get better on its own. It could get worse and most likely will and at that point he will need cord release surgery where they cut the heel cord. We want to avoid this as much ad possible since it will leave him with a floppy foot. He'll get the AFO's in a couple weeks and will only wear then when weight bearing and standing. I'm kind of excited since he has trouble with stability from standing on his heels. I'm curious to see how he does. Plus they are very cute and we even got to pick a cool design for them. ( it's a secret for now we didn't tell Daddy what they look like). So you will all have to wait to see them!

All in all it was a great visit. I was a little emotional after and I'm not sure why. We didn't hear anything we didn't already know but sometimes these appointments just emotionally overwhelm you. It's almost impossible to explain. It's one of those just have to be there things. I know that a horrible excuse but I really have no idea.

We don't have anything else going on until the 29th so I'm sure I'll have lots after that between visits and birthdays! Stay tuned!!!

Tuesday, January 1, 2013

Phew, 2012 is gone and 2013 is here!

What an exciting holiday season! So on the moving front here's the news......................... Wait for it....................... STILL NOT CRAWLING!!! Hahahaha Although we're still not crawling we are making some sort of movement. Sliding backwards and in circles. That's about it. Either way I'll take it as long as that means one day we're crawling! So here's our holiday recap!

Thanksgiving- We had a great time with the whole family! My whole side came over here to celebrate and we ate and ate and ate. It was awesome! I sat back at one point and looked around and thought WOW, this is so great! I'm so blessed!

NYC-  A couple of days after Thanksgiving we headed out to NYC! What a buildup! I have never kept such a secret in my life! Here's the video of the reveal;

She was such a trooper, she made it the whole day walking around in the cold without much complaining. We even made it to most of her "stops" American Girl, FAO, M&M, Rockerfeller Center, it was great! Bella also got a surprise at Christmas, tickets to go see Annie on Broadway in NYC. So we're going to head out there in the spring and probably stay overnight! It was so nice to do something just for her. Most of this year has been kind of centered on the baby and she's been such a good big sister. She deserved it!

December was mostly filled with colds, flus and stomach bugs! It sucked! First I got a stomach bug. Then Bella got it times 10! We don't need to go into details but it was a MESS! Then started the cold/flu Bella started it and the rest of us followed! The baby and I are still at the tail end. 

Eddie got his first haircut this month and it was so hard to do. I loved all that hair, but he couldn't see anything! So haircut it was and let me say he was quite the handsome little man. Don't you think?
Not happy!

So handsome!

Christmas was wonderful! Full of family and friends new and old! My house is so filled with toys it's insane! This place looks like a daycare on steroids! Although I'm sure anyone with kids has this same problem after Christmas.  Again, took a moment to look around and thought, WOW, so blessed!!

New Years was completely awesome! Eddie and I were able to get a dressed up and go out for New Years! We had so much fun. At the end of the night (well this morning really since last night we weren't really in the reflection state of mind) I realized that it wasn't so awesome for any particular reason I mean we had fun with everyone but it was just so nice to really relax and enjoy each other. Every year our love gets better and better. We've had a few really bad years but this one was the complete opposite.  We have found so much love and respect for each other. We still have a lot of work to do in our marriage but realize that marriage is work. Not tough I hate this job work but the kind of work you love and even when it's hard you think, that's okay tomorrow will be a better day here! So I don't really have one resolution but there is a lot I want to do this year, 1. Make sure that I spend more time with those friends and family that I keep saying "we'll do lunch soon!" or "we'll get together really soon!" 2. Try everything! Even if it scares me! 3. Find my passion! I'd like to start writing. Really write, even possibly make money doing it. I love it and always have. and finally 4. Soak up and appreciate everything around me! This life is awesome!

Happy New Year Everyone!