Spandex World, I mean Disney World

We are back in the cold fog. Back from the white sandy beaches. Back from the World of Spandex, Fanny Packs, and Grown Men Wearing Mickey Ears (Magic Kingdom), where our favorite section was Stroller Land (Fantasyland) and our favorite ride was The Sea of Strollers: Just Try To Find Yours, We Moved It (every ride).

If you've ever been to the Magic Kingdom (which basically is Disney World if you are in the know), you know what a logistical nightmare it can be to get in. I think parking, taking a tram to the monorail, then taking the monorail to the park wouldn't be so bad, but you have to add to the equation taking everything out of a double stroller, folding it and getting it onto the tram and monorail.  So you've got John with the stroller, me with a kid, diaper bag, and bag of snacks, and my mom with a kid and bags of drinks and a purse. It's really something to see. My advice if you have two small children or twins: BRING AN EXTRA ADULT.  Also, if you are trying to decide between Magic Kingdom in Disney World or Disneyland, which are close to the same thing, I personally like Disneyland better for little kids. You can walk in and out of Disneyland and go across the street to your hotel and rest. If you are looking for a resort with more than a couple of pools, then Magic Kindom is probably better for you.

We also had lots of fun at the beach and in the pool. I just had to go to Siesta Key when we first got there, it is known to have some the most beautiful sand in the world.  Of course it was pouring and storming there because my luck of the Irish is cancelled out by my German side, so we drove a little north to Lido Key where it was sunny as can be.   Other than that, just a lot of grandma and grandpa time!

Anyway, click here: Album on Photobucket for more pics!

Apparently my Youtube movie won't embed, so here is a link to a movie of Evan waiting in line for the Dumbo ride: http://www.youtube.com/user/gingertwinmom#p/a/u/0/QRhSfUAl85Y

Corey's Farm Day

Corey's Farm Day was on Monday. I can't believe a year has gone by since the last one. It is a day on the farm for special kids with physical differences or developmental delays to be close to animals and ride ponies and horses. It is such a wonderful thing for these kids. Every area needs one of these.

Evan demanded us to go on two antique tractor rides and both Evan and Amelia rode a pony. They also pet all of the farm animals and got cowboy hats and bandanas, which they refused to wear.

We have been very busy. Over the weekend we went on a miniature steam train and yesterday we went to the zoo. Train, farm, zoo, all within a few days of each other. I remember when I was a kid, we waved to the cows on the way to the zoo, where we rode the train. Once a year. And that's the way we liked it!

Now we are getting ready to visit grandparents in Florida (8.5 hour flight with layover) and visit the Magic Kingdom for two whole days!  I want to be able to upload pics from my phone again, but it's not working, so we'll see.

Anyway, here are some more pics and a video of Amelia on the pony. I couldn't get Evan because I was walking with him.

Big boy haircut yesterday!

No time to blog!

I have no time. No energy. Now that the twins are well into their twos, it is chaos during the day. As I write, Evan is climbing onto the Little Tikes kitchen. Oh, now there are two of them on the Little Tikes kitchen. They are climbing from the kitchen, onto the arm of the couch, and jumping onto the couch. Next thing to happen will be Amelia jumping from the couch to the floor, which she does perfectly. I usually stop Evan because of the one kidney thing. He has to avoid impact trauma "in general over the course of his life", but asking a two year old boy not to jump off things is like, well, asking a two year old boy not to jump off things. And of course we are busy dealing with attitudes, a lot of not listening, some time-outs, and potty training.

Other than all of the action, things are going well around here. We found out we will be here for an additional 5 months, so I have finally adjusted to that. It was going to work out perfectly to move for Evan's appointments and both of them continuing pre-school (they get kicked out of the program at 3, so I was just going to start them when we moved in February.) So now I have additional work to do to figure out things here, then at our next location. And of course there is the stress of not knowing where that is!! I think that is the reason I haven't been blogging. I've been in the blahs. But the sun is trying to come out this morning and around here, that is a big deal.

Well, I'd better go, they are fighting over balls. They each have the same one, but they both want two...

Oh, and did I mention that both of them have their first 2 year molars coming in and they are both having bouts of over-emotional-ness? Yeah...

It's Video Monday!

Maybe I should do this every Monday. I have such a backlog sometimes! Sometimes my YouTube channel doesn't load videos for some of my family, so I post here, too. Here we go!

This is why I'm having a hard time blogging!

"Hello? Is this Cheeto phone working? Yes, my name is Amelia and we have a hazmat situation here. There are noodles and peas on the floor and a slice of sausage is stuck on the wall!"

I spend half of the day feeding my kids. I'm tired. Now that they are comfortably into their two's, they've stopped wanting vegetables. Now they will go for days without eating a really good amount of anything. I hope this is a phase. As my mom says, though, there won't be an issue in twenty years, they'll have thighs just like us.

Radial Aplasia, Missing Radius, Pollicization Splints/Braces

5/23/12- I wanted to update, since so many find this page still. Evan is 4 now! Here is a recent blog post of a new splint and update:
http://mytwinmadness.blogspot.com/2012/05/medical-stuff-with-my-superman.html


* So many of you find this blog post from all around the world, but there is no site where we can discuss and talk to each other. I decided to start a Google Group. Please visit and join!:) http://groups.google.com/group/radialaplasiakids * -Ok, this didn't work out too well, so many come to this page, but no one joins this group. Oh well.


Well, that title ought to get the correct "googlers" out there!

Two or three times a week, I get people on this blog who have googled "apple juice and milk" or "bumble chair", which are titles of past blog entries. So I figured this title might get people who desperately are searching for information of limb differences that Evan has.

I have been searching for information since I found out Evan had limb differences in the womb. I did not find much.  Throughout the past couple of years I continue to not find much.  I have found people here and there that have the same type of limb differences or have children with them, but not anyone to talk to about it or who responded to me.  I find it disheartening that there is such a huge disconnect between people that are going through the same thing. So if there is someone out there seeking answers, this is for you. And please feel free to contact me!

One of the most important things to be educated about when having a child with limb differences are the splints or braces that are made to help in the developement of the limbs.  Since Evan was born, I have lived in 4 different locations across the country and seen 4 different upper limb/hand specialists/surgeons. I can tell you that there are without a doubt different levels of hand surgeons (and thank god I got a third opinion).  I can tell you that many pediatric therapists do not have experience with these children and babies.  I can tell you that some don't even know what kind of splinting should be done.  I have come into contact with parents that don't even know their baby/child should have splints made immediately.  I only know this because a therapist came to see Evan when he had is heart surgery and was shocked that he hadn't had a splint yet at 2 months old. And we saw a pediatric hand surgeon when he was a newborn!

Rule #1 parents: Hand/upper limb surgeons don't care about splints!! Only one of the 4 we saw even suggested it!

OK, here are Evan's three splints.

The first is a night-time splint. This splint is almost straight now (well, 20 degree angle), but started at a 90 degree angle when he was a baby. Hopefully we will correct the splint to 10 degree angle soon.

This is the splint he uses on his other arm, it is a post-op splint for after the the thumb pollicization surgery. The first splint was horrible and the thumb kept slipping out. We saw a different person that made one better. The thumb is very secure and held in the correct position with this splint. One month after the surgery, he began only using it at night and will continue to do so until 6 months later.

His third splint is one that I requested to have made. I refer to it as "the sports brace" because I wanted it for when he is outside playing. He has a hard time with falling and started to hurt his wrist, or point.  The surgeon told me this wasn't necessary, but I don't agree. Any kid who rides a bike or has rollerblades has wrist guards, why shouldn't Evan? It's just rediculous. So I came up with the idea of a guard for this "point" area and had an OT make it for him. It's basicaly a dome with shock absorbing foam inside.

Please feel free to contact me if you have questions, or maybe you find I am missing information!!

Hoppy Easter!

Hope everyone had a great day.  These are from a week ago.  I knew that the sun was going away for awhile, so I planned ahead and took them early.  More to come.  My sister and nieces are here and we are busy, busy!

Easter Sunday, taking the ferry to Seattle Pike Place Market with the kids.

Miss Ailey, cutie pie.

Genevieve, Evan, and Amelia. And some snacks.