Vacation

Well, I was all excited to make this post about our wonderful vacation to FL with The Husband's family, but Blogger is being difficult so I've spent more time muttering unpleasant things under my breath than I'd care to this morning.  Without further ado, and totally out of order here are some pictures of our vacation.

William making a sand castle.  He spent 99% of his beach time sitting in the sand exactly like this.  The other 1% was spent making sure no crabs were in his general vicinity.

No Fear Boy nearly gave me a heart attack more than a few times.  Here he is taking a break so mommy can take a break from making sure he didn't float away.

Gatorland.  Oh, Gatorland.  We decided to catch the gator wrestlin' show, but we were a few minutes late coming in.  This caused attention to be drawn to our massive caravan of children and Zay, who raises his hand any time someone asks "Who wants to..." ended up getting there just in time to be called into the ring with a man whose common sense I question greatly and several large alligators.  How do you explain to a man wearing a microphone in the middle of an amphitheater 1/2 filled with strangers that no, your son does not posses the understanding to safely come into the ring and pick out the gator to be wrestled?  Well, I don't know, so I sat on the edge of my seat and chewed my fingernails while my son walked into the ring.  I would like to add that this picture was taken by my husband who was all "Oh, he's fine, just relax you ninny.  It's just alligators and I'm sure that man totally knows what he's going."  There was one really tense moment when the man jokingly told Zay to "Jump in and pull her out!" and Zay started walking to the edge all "Sure!  Let me get that for you!  This'll be great!  Look Mom, I'm jumping into gator infested waters!!"  I think I'm having a heart attack just remembering...

Zay made sure to take a picture with every princess.  He was kind enough to let his sister join him for a couple of pics.

It rains a lot in FL, and it doesn't matter if you have paid a gazillion dollars and driven thousands of miles and spent 10 days in an RV with 2 adults, 6 kids and 2 dogs (we were totally the OK version of the Griswold's).  FL totally doesn't care.  BUT, none of that matters because they sell these super cool sunglasses at Disneyland that you can wear 24/7.  Because, see, the tinted part swings open and TA-DA!  24/7 sunglasses.  I don't know what William actually saw during the trip, because once he got these sunglasses he didn't wear his prescription glasses again.  And he's legally blind.  He totally did. not. care.  The glasses were THAT cool.

"Dack Paywoah" watching the show at Cinderella's Castle.  Totally enthralled.

Darth William dancing with his cousin at Mickey's Dance Party during the Not So Scary Halloween Party.

Shoving each other out of the way as they run, not walk.  I could take this same picture a million times in different settings.

Who Ya Gonna Call?

Ok, so when the developmental pediatrician said "ectodermal dysplasia" I thought "Ghost Busters!". It was 11:30am and it had already been a long day.

So we now know why Isaiah doesn't sweat very much, in fact it's just his head that sweats and I can count the number of times I've seen him sweaty on one hand. It also helps explain what is happening to his feet. The good news is that his feet have grown in length and flattened out some, making shoe buying a lot easier. The bad news is that the skin on his toes has started breaking down like the scar tissue on his scalp used to, which makes shoe wearing a lot more difficult. I'm thinking moccasins this fall. As for the not sweating thing, well we'll just have to be careful, there isn't much else to be done. I just hope if the time comes that he wants to play sports he chooses something he can do in the air conditioning....like bowling.

It's almost time to start another school year and we are no closer to having a school, public or private, within a reasonable driving distance that will work for Isaiah or William. So we will continue to homeschool. William progresses nicely, if very slowly. Once something is in his head it stays. Isaiah...not so much. He can tell you his name correctly 10 times out of 10 and his age correctly probably 8 times out of 10 (subject to change upon his next birthday). Colors are hit and miss, shapes are totally miss, as are letters and numbers. We're working to help him recognize his name with the hopes that he will eventually be able to put the letters in order himself and then write it. His occupational therapists are fantastic and help us come up with new ideas to help him remember.

The human brain fascinates me. It is resilient beyond belief, and even when it's been pickled in illegal substances during formation it works so hard to make up for the "holes" it has. With William the holes are finite, when we find them we can work around them and progress is possible. With Isaiah they seem to move around, making things much more challenging for him.

Isaiah will be 7 very soon. Seven has always seemed like a turning point to me. It's when you start leaving behind the "baby" stuff and start becoming a big kid. It won't work that way for Isaiah. For him the turning point is that his challenges are becoming more apparent to other kids his own age. Soon his social inappropriateness won't be met with knowing smiles from other mothers who know how kids can be. Soon other kids will really start to notice that this very tall 7 year old is very different from them.

I feel sad that he faces these struggles, but he is who he is and who he's always been. He's a very sweet, unique and fun kid, and he has some really great siblings :)

Hi There :)

Long time, no blog! Life has been busy and blogging got away from me. In fact, lots of things have gotten away from me. Let's see...in the last four months we have been caring for a toddler with special needs, learned our perspective on what constitutes a "difficult" child is highly skewed...in fact you might call us "desensitized" (hey, as long as they don't play with fire and they sleep 5 hours a night what is there to complain about?), my doctor diagnosed me as "weird" (and with EDS), Isaiah went through some testing with a psychologist that I think is going to be a big help, we've been going through the process of getting DDSD services set up for him and planning for his adult years (it's never too early, especially when the waiting list is like 8 years long!), we got a new puppy, started remodeling the house, we started school, joined a new homeschooling group and have been taking weekly classes (ok, so we don't make it every week..we've been passing around various viruses too), had a ton of doctor and therapy appointments and the list goes on and on and on.

We're at that joyous time of year when I try to find winter shoes for Zay's odd little tootsies. The orthopedic shoes I bought last year still fit him length wise, but are so tight around that he's got blisters on the bottoms and tops of his feet from wearing them once. I can't take out anymore insoles, they are as deep as they get.

His toenails on his big toes have continued to become misshapen, and detach around the quick. It looks like he'll lose most of the nails, if not all of them eventually. Meh, toenails shmoenails, right? It doesn't seem to bother him unless we try to stuff them into shoes. After that whole hole in his skull thing toenails seem pretty minor.

There is much gnashing of teeth and rending of garments in my house, something about a toaster and broken eggs, so I'll update with pics later.

The *Toe*

The big toe on Zay's left foot continues to change. He complained of it hurting this weekend and when I looked at it I saw that the toenail on the inside-side has detached:



It's difficult to get a good picture of the band forming at the end of his toe, but it is getting deeper and deeper. You can see that the end of his toe was round (though now that I know what I'm looking for I can see the beginning of the band forming near his toenail) from this picture.



The good news is that his feet are the same length again. I don't know what happened with that, but we'll take what we can get. He was done with the pictures, so I didn't get one of the thickness yet, but I really need to talk him into that soon.

We Need Feet Fertilizer

I'm going to start planting Zay and Will in fertilizer every night, I swear. First, remember those deep, orthotic shoes I got Zay? I've had to take all of the insoles out of them and they are on the verge of being too tight, yet his feet haven't grown at all in length. If I barely tie them he can stand it, but he's wearing his super stretchy water shoes most of the time right now, and The Husband is going to talk to a friend who does leather work to see if he can get him some shoes made by the time it gets cold. He's going to have to wear moccasins I guess. Such a trend setter :)

Second, William's right leg has stopped growing. It's been a little shorter for a couple of years, so we made up for it by putting extra insoles in his orthotic shoes, but he's been having a harder time walking lately. I talked to his PT on Monday, she remeasured him and his right leg is now over an inch shorter than his left. She evened his shoes out as best as she could, and he's walking better as long as he's wearing the shoes. However, it's the most insoles she can put in the shoe and still fit his braces in, so we'll have to go to putting the extra height on the outside of the shoe should it get worse.

Better pictures of Zay's hair thinning:

Hair And Walking

Holy cow, Zay's hair is falling out fast! I first noticed it was looking a little thinner than usual about a month ago (you can see it a bit in the picture in the Spoiled Rotten post). Yesterday we went on a float trip and in the sun after his hair got wet I realized he'd lost a LOT of hair in the last month or so. There is an all over thinning, but the totally bald parts are along the scar on top and the bald patches he's always had on the back of his head have gotten bigger (no scars there). His scalp looks ok so far, but I'm worried this is a sign that his skin is getting fragile again. Still, the hole in his skull is fixed so it won't be anything like it was before, as long as it doesn't totally break down. I'm breaking out all of the skin oils and special vitamins again :P





This weekend I also realized that Will is truly at the place where almost all people with Noonans get...he's having a really hard time walking very far. His bottom half is crooked and his legs are different lengths and it's so much effort to walk that he wears out quickly. I guess it's time to figure out how to haul his ginormous stroller with us on our long weekend trips. We should have bought a bus instead of a minivan!

Spoiled Rotten

I went to get the boys to put them in bed and this is how I found them. Enthusiastically digging into bowls of ice cream that their big sister gave them. Sneaky, sneaky Sissy. I love that the older kids spoil them, but not when it makes them hyper before bed ;)