Isaiah Updates

Vacation

2011-10-13T08:56:00.000-05:00

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?

2011-07-31T08:11:00.002-05:00

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 :)

2010-11-04T07:59:00.002-05:00

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

2010-06-28T17:40:00.006-05:00

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

2010-06-17T08:49:00.004-05:00

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

2010-06-08T08:02:00.006-05:00

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

2010-05-15T07:59:00.002-05:00

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 ;)

Speech Progress!

2010-05-12T07:31:00.001-05:00

Zay recently had his yearly speech evaluation and we got some fantastic news! He tested within the normal range for vocabulary! This is the first time any of his testing (other than physical) has landed him in the normal-for-his-age range. We had cake to celebrate :) So now his speech therapist will concentrate on pronunciation, and maybe we'll get more good news next year.

We've Been Busy!

2010-04-28T08:35:00.002-05:00

This is going to be a long one! The Husband took Monday and Tuesday off and came with me to doctor appointments. I tell ya, having him there to help soothe Isaiah and allow me to actually talk with the doctors was fabulous. Usually our doctor appointments leave me feeling like I've been through a tornado, but having The Husband there made it more like a light spring rain. I think I'm going to start arranging certain appointments so that he can come with :)

On Monday we took both boys to the developmental pediatrician (AKA, The Best Doctor In The World, AKA, TBDITW). We discussed doing IQ testing on Isaiah for the purpose of getting him on the waiting list for DDSD services, and getting him set up with a psychologist that "matches" his personality. The dev. ped. did a great job recommending our pediatrician, and I have faith that he will do a good job picking out Zay's psychologist too. He seemed to think that Zay's anxiety is as under control as we can get it, and I think he's right. Between the medicine cocktail he's on, the occupational therapy increase, and the soothing techniques we do at home I think it's covered. He still has breakthrough anxiety, but once he's pushed past whatever is causing the anxiety (separation, change of activity/scenery, etc.) he's able to calm.

On to William and TBDITW. He's going to order some genetic testing to try to figure out which Noonan Syndrome mutation Will has. Right now he has a clinical diagnosis. Years ago we tested him for the PTPN11 mutation and it was negative. At that time the PTPN11 mutation was the only one they had a test for, but now there are 3 others. The geneticist we saw a couple of years ago was sure he had Costello Syndrome instead of NS, but that test was negative too. So, we shall wait and see. I think the eyeballing method (aka clinical diagnosing) is complicated with Will because of the alcohol and drug exposure. Oh, and that's another thing. TBDITW had Will's charts from when he was a baby, and he gave us some info that we didn't have before. I just can't believe all that he has survived. The fact that he's even alive leaves me in awe some days.

So, on Tuesday we took Isaiah to the regular pediatrician for a follow up to his ER visit due to his eyeball swelling from allergies. He's never had seasonal allergies and we had no idea an eyeball could swell, so we were blindsided by that one. Grossest thing I've ever seen. Seriously. The white part of his eye swelled up over the blue part *shiver* While we were there we addressed his head (it's growing lopsided now!) and foot growth, and will be watching that more closely. His pediatrician will talk to the dev. ped. about it, but she thinks he should go back to Dallas to be followed by an ortho. There is an ortho group here in OK, but.....well, we'll be going to Dallas, unless she finds someone in Little Rock that she thinks is really good. No hurry on this though, she said to just enjoy the summer and we'll get back to it later, as long as things don't deteriorate rapidly. I appreciate that. She's also going to work on finding someone to follow his circulation/vein issues. The head surgery has changed his blood flow, and he is looking more and more like he has AOS every day. Mottling, visible veins, the banding on his toes, plus the change in foot growth....his feet have become such an issue that his balance is off when he runs, and his feet drag when he walks.

We also took Will to the endocrinologist on Tuesday. His growth rate has slowed down again, which means if we can't get him growing again at a rate that is acceptable to the insurance companies his growth hormone therapy might be suspended. Again. They upped his dosage and we have 3 months. When they first measured him he was at 46 3/4 inches, but the doc thought we could do better, so we streeeeetched him out and tried again, and got 47 1/8 inches out of him :) He has gained weight though, he's becoming a stout and muscular little guy. It does my heart good to see. He used to be so tiny and frail. Now he's tiny and sturdy!

They Are Pooped

2010-04-12T20:18:00.001-05:00

Zay from severe allergies that caused the whites of his eyes to swell, and Hero from running through our freshly planted garden.

A Year Later

2010-03-17T08:17:00.004-05:00

This little head has come a long way in the last year! Part of the post-op instructions were to train his hair to cover the scars. So, we let it grow out, and only trimmed it a couple of times over the last year. His curls were a mixed bag. On one hand, his hair could be 5 inches long without it hanging in his eyes, and that made it easier to train. On the other hand, you can't really train curly hair to do much of anything it doesn't want to do. Not once the gel or goop or wax or any of the hundred other things that we used to try to coax it to bend to our will dries. It didn't really matter over most of his scalp, but right above his forehead, right in front, there are thick scars that made his hair grow differently, in a triangle shape. It's gotten better over the course of a year, more flat, and we're hoping it continues, but his hair sort of sticks out funny there, and there wasn't a darn thing we could do about it.

This past weekend Isaiah wanted to use the "buzzy thing" to cut his hair, like his Daddy and brothers do. I thought it a fitting one year anniversary type of thing to do. So I combed out his hair in preparation:

It was no short task, curls do not like combs, whether attached to a "buzzy thing" or not. But he stayed as still as he could, and was very happy with the results.

You can see the right side of the triangle shaped scar, and if you look closely you can see how his hair in the front sort of sticks out differently.

Right behind his ear on the left is a circular scar where a drain was placed. I didn't know it was still there until his hair was short.

This isn't scarring from the surgery. This is pretty much what the back of his head looked like before. These bald spots had hair on them at one time...briefly. It grew in and then fell out within 3-6 months time when he was a baby. The bald spots were along the dilated veins. We don't expect that hair to ever grow back, these bald patches are shiny and smooth...not even fuzz grows there.

As you can probably tell these pictures were taken over the course of 3 days, and in the end he needed sissy to hold him so we could finish up. He was having fun in the first 2 pictures, but would only go for face pictures...no side or back of head. I tried taking the pictures without him knowing, but he always heard me at the last second and turned. Taking pictures of his head (and feet) sends him into an anxiety attack these days. Yes, I feel mean doing it to him, but it's important for his future medical care, so I try to be as gentle as I can and give him the time he needs.

It was a long, long, long year, and it really did traumatize him in ways we are still discovering as he becomes more verbal and gains the ability to express his emotions. I wish we had been able to do it when he was younger, or that the sinus pericranii was fixable without removing the scar tissue, but that's not the way it worked out. I wonder if the process has caused a permanent anxiety disorder, or maybe just hastened it's onset...nobody can know. I also wonder if it caused his development to be slowed even more. I suspect so. Still...it had to be done. The skin over the sinus pericranii was getting thinner and thinner and the scar tissue was becoming more and more fragile and infected. We waited as long as we could, mostly because we didn't have a choice. We couldn't find a doctor that could do the surgeries, but even if we had he was in foster care. The thought of not being able to reach a social worker for permission to give a blood transfusion during surgery, should he need it, scared the daylights out of us. We wanted to be able to make the decisions for him, we didn't want a disconnected voice in a far away office to do it. And heaven forbid surgery didn't go well...we wanted to be responsible for him...we wanted him to have parents...

Sometimes this whole ordeal seems like it happened a long, long time ago, and I can't remember it. Then sometimes I forget it's happened at all, like when he hits or scrapes his head and I have a fraction of a second when that old panic sets in and my brain jumps back into emergency mode. But, most of the time I look at that little head and thank the stars for the awesome doctors and staff Children's Medical Center of Dallas.

William's Birthday

2010-03-15T11:16:00.005-05:00

Mah babeh is NINE. How does this happen so quickly?

Didn't he turn 8 just last week?

His favorite present was the Glow Station. (That's his excited face :)

Poor little man was in the midst of a 48 hour asthma attack, and though we tried everything we knew to do to keep him home on his birthday, he ended up getting to ride in an ambulance to cap off the day. I don't have a picture of that, I was too busy trying to look calm so he wouldn't freak out.

He's doing better now, though he still needs his inhaler every 3-4 hours. He asked to go to the Tsa-La-Gi village for his birthday, but that's off until the trees stop all this darn pollination and we can all breathe easier.

His First Mohawk

2010-03-04T08:11:00.005-06:00

He used to have what we called a reverse mohawk, and he would ask for us to make his hair stick up like Will's when we were washing his hair, but uh....well....we did the best we could, lol. He hasn't asked since surgery, I suspect because he thought it might pull his hair and that hurts a lot still, but he finally asked for a soap mohawk and here it is...the first soap mohawk Zay's ever had! He was so excited that he got out of the bathtub and ran around the house with soap all over him to make sure everyone saw his mohawk.

And just for fun, look at this hot mess of retro goodness my husband brought home. It works perfectly, though it looks like it's been through battle. It's a 1962 Westinghouse Coke machine. I didn't like it at first, but it's growing on me...slowly.

Zay's Head and Will's Eyes

2010-02-14T08:51:00.003-06:00

We had something amazing happen last week. Isaiah slid down the hall way and unfortunately, his head met with a small finishing nail that had worked it's way out of the trim. He cried and I had that old, familiar moment of panic when I realized it had hit scar tissue and was bleeding. That's not the amazing part, of course. The amazing part is that by the next day there was just a small scab, and by the end of the week it was healed. Totally healed. On the scar. The worst of his scars, no less. On his old scalp that would have resulted in infection and an open wound that would have taken months to heal, if it ever did.

Shortly after surgery it appeared that the scars on his scalp, although considerably smaller, would still be as fragile as they were before. While the skin on his scalp will never be "normal" it seems that for now at least, it isn't as fragile as it used to be!

Also in the amazing category: he has finally started remembering his name every time he's asked. Several months ago he started remembering it sometimes, and then it became often, but now he remembers it every. single. time. Before we know it he will start remembering his age every time (except that keeps changing every year, so maybe not). Soon we're hoping he'll start remembering at least a couple of colors on a regular basis. BTW, his memory and cognitive issues are probably not related to AOS as much as they are to prenatal drug exposure...just thought I should throw that tid bit in there for my AOS friends that are reading.

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Will's Eyes

Oh boy. When we got Will we were told he had retinopathy of prematurity (ROP) and he needed glasses, and that was pretty much the extent of what we knew about his eyes. Due to some issues that recently arose I found it necessary to find a new eye doctor for him, and boy am I glad I did! The new eye doctor explained ROP to me, and then after thoroughly examining his eyes during 2 visits over the course of a week he was able to give us a really good idea of what and how Will sees.

The bad news is that Will's eyes do not function independently. If one eye is covered the other eye is blind, whether he's wearing his glasses or not. Like, he doesn't even have 20/600 vision, blind, and apparently at that point they don't bother to continue to measure. Together, without his glasses his vision is 20/600. With glasses he is able to see at 20/70 with both eyes...which I gotta tell ya, isn't so great.

He has a long list of things that are wrong with his eyes, but the problem isn't entirely in his eyes. It's partially in his brain. It turns out that the alcohol exposure he suffered before birth, combined with being born at 26 weeks and suffering several brain bleeds has damaged his brain's ability to operate his eyes and interpret what it sees.

As bad as the news was, I am so thankful to have an understanding of what is happening, have a game plan for what could happen and most importantly, to have found an eye doctor who is knowledgeable about Noonans Syndrome and Fetal Alcohol Spectrum Disorder AND has a fantastic chair side manner.

The good news is that he was SO excited to pick out his new glasses, and his enthusiasm and joy was, as always, infectious. He insists that his current glasses are not brown, but are "caramel" and he wanted another pair of caramel glasses, but they could be a little lighter or a little darker than his current glasses, but if they were "a little darker they wouldn't be caramel anymore", because then they would be black. He ended up picking out black frames :)

Snow! Again! (Aka, The Exclamation Point Post!)

2010-01-31T12:33:00.005-06:00

Twice! In the same winter! We're so excited we could run around screaming!

Snow angels!

Very, very happy boys!

Way WAY Back

2010-01-27T09:16:00.006-06:00

Here are some pictures from Isaiah's Life Book. As you can tell I am no scrap booker, but because he was in foster care I had to do the best I could ;)

The Way Back Machine

2010-01-26T08:21:00.003-06:00

He was 6, probably almost 7, months old in this picture. He started walking way earlier than we were ready for him too. You can see the edge of the playpen in the background. In those days putting it in front of the door was enough to keep him from escaping. That didn't last long though, as very soon he was able to just pick it up and move it out of the way. I know, I know, that seems crazy, look at that sweet little baby face, but it's all documented by us, doctors and the case workers he had at the time. We didn't call him Hercules for nothing ;)

He was about a year and a half old in this picture, and had his fork ready, waiting on daddy to hand him his slice of watermelon. This boy LOVES his watermelon!

He got my hair conditioner and helped himself :)

Grammy told him "no" about something, but Sissy was there to make it all better. He loves his Sisters so much. He was about 2 years old here.

Brother put a tattoo on his belly, and he was so proud of it! He was 2.5-3 years old here.

Now On To Fun

2010-01-20T11:22:00.004-06:00

I bet you didn't know that in addition to being a superhero fireman Zay is also a rock star. It's true, though he's more about the moves and yelling "YEEAOOOOOWWWW!!!" at the top of his lungs than actually singing. He's also got the costumes under control.
Exhibit A:

Exhibit B:

Apparently you can't be a rock star in jeans, but mom's flowery robe is a necessity. Go figure. :)

Business First

2010-01-20T10:32:00.010-06:00

I don't know about you, but I'm glad the holidays are over. We just finally found time to get the decorations down, and things are just starting to settle down.

Things have been interesting on the AOS front. I finally got him in to see a cardiologist and his heart is healthy and normal :) Since surgery in March the small veins in his face and eyes have been visible off and on. They are more on than off these days, and he's taken on a blue tinge around his mouth a couple of times. The cardiologist said it was vein related and not heart related and veins are not her job. So...I guess I'll talk to his pediatrician about who to see about the veins. His neck is still popping and causing pain. I think all of the doctors are hoping it just goes away, because nobody knows what to make of it.

His feet, or rather his left foot, continues to get more unusual. The nails are changing, getting thinner and smaller, the 2 smallest toes don't appear to be growing at the same rate (which is slllooowww) as the others, and the whole foot is now smaller than the right foot. Oh, and his big toe has this odd...line on the end of it that is making the end of his toe something other than round. When he was a baby his toes were so small and round. They looked like little peas sitting on the ends of his feet, and though they've grown, until recently his big toes were always very round (and super cute).

Getting pictures of Zay's feet is not unlike trying to stuff a greased pig into a wet paper bag at 100 miles per hour. But, Claire felt up to the task and she and I (and at one point Lane) managed to get a few pictures. None of them are very good, and he was moving so much that I couldn't get a picture of the end of his big toe. Claire had the brilliant idea to take a video instead, and I think you can get the idea from that. Both feet are continuing to get thicker, but we all died of exhaustion before I could get good side pictures.

Left

Right

The best picture I could get of the length discrepancy.

Edit: I guess I have video fail. I tried twice to get it to upload, but I can't get it to play. Let's try this instead:

It's Isaiah's First Christmas!

2009-12-10T17:48:00.001-06:00

Ok, not really, but he doesn't remember years past, so it's all new to him this year. Last year he had the expanders in and everything was upside down in his world, and the year before that he was only 3. It's been fun watching him get SO excited. Everyone else enjoys things, but he is just fascinated and in awe at every little thing.

When we said we were going to see the lights last weekend he had no clue what we meant, and it didn't dawn on us that he didn't remember anything about what goes on this time of year. When we got there he nearly exploded from the excitement, lol. He's also fascinated by the fact that we hang actually candy on the tree. I've let him have a piece of candy cane every night because he's just too darn cute. Everyone should experience their first Christmas at 5 ;) It helps bring the Christmas spirit around here, that's for sure.

Making Lemonade

2009-11-18T10:22:00.003-06:00

Marie at All Access Pass To Jack nominated this blog for a Lemonade Award, which I thought was pretty cool! I'm honored!

The Lemonade Award is given to bloggers who show a positive attitude, gratitude and a willingness to share their ideas, support and online friendship. In other words, people who make lemonade when they get lemons!

The rules of the award:

1. Put the Lemonade logo on your blog within your post

2. Nominate at least 10 blogs with great attitude or gratitude

3. Link the nominees within your post

4. Let the nominees know that they received this award by commenting on their blog

5. Share the love and link to the person from whom you received this award

Ironically, Marie would be the first person I would think to nominate! But she's not the only one I draw inspiration from around the web, here are some others:

Tara at A Day in the Life of..... whose daughter has life threatening food allergies. I admire her momma bear attitude when it comes to keeping her daughter safe.

Dorothy at Urban Servant who has opened her home to 10 children (so far) with special needs. She's a homeschooling mom who is out in her community doing what she can to make it better, and I admire that.

The Knopf Family, who have children, both biological and adopted, with Prader-Willi Syndrome. I've been reading this blog for years, they are such an interesting and loving family.

Casdok at Mother of Shrek is also someone I have admired for years. I feel like her perspective of parenting an adult with special needs is invaluable. I've learned a lot from her posts.

This one is a twofer. Becky Orton is my hero. Ok, one of my heros ;) I hate when people tell me "I don't know how you do it" because you just do. There isn't much choice really, is there? As much as I hate to hear that I do think that when I read Becky's blogs (though I'd never say it out loud!). Their family faces so many trials, but through it all she radiates positivity, strength and most of all love.

Cayla at More Matter Less Art. I've "known" Cayla for awhile online, even before her son was born, and I've watched her become a strong mother and woman who is always honest and always hopeful in the face of the unexpected.

The Roman Garden for their work on building up the Noonan Syndrome web community. Their new site.

Ok, now I know I'm changing the rules here, but bear with me. When Isaiah came to us we knew nothing about what was going on with him. We had gotten a phone call from a social worker who asked if we would take this baby with "some weird head thing" going on. When she arrived in my driveway I opened the door to find an adorable, smiley little baby with blue eyes and a thin ring of curls around his hairline who had this horrific looking scalp full of scabs and dilated veins and a skull with a hole in it. When we first heard the words Adams-Oliver Syndrome we were lost. Nobody had even heard of this syndrome before, and there was about 2 paragraphs of information on the web. Eventually, I connected with a couple other mothers whose children also had been diagnosed with AOS, and then started following the story of little Brenden. Brenden passed away the day we left the hospital after Zay's last surgery. A lovely lady named Shannon who has a son who also has AOS started the AOSupport website shortly after that. It was a sad and scarey time in our little AOS world because the doctors were clueless and so were we. Since Shannon started the AOSupport website our little AOS community has grown, and we have already started to understand AOS better and soon the medical community will too. Here are their stories, and though they aren't really in blog format, they are certainly making lemonade :)

Long Time No See

2009-11-17T20:17:00.004-06:00

The trip to Dallas seems like forever ago now. The visit went well, the doc was very happy with the way the scars have healed, and we don't have to go back unless something goes awry in the future. It was just over a year from the start of the skin expander process until he got the all clear. A very, very, very long year, and that all clear was so sweet.

So we've moved on to better and bigger things. Since I posted last there have been many doc appointments, a new pediatrician, and several med changes. Oh and potty training! It's been interesting, to say the least! When he feels bad and out of control he's not potty trained. When he feels good and in control he's completely trained, even at night. Fortunately, he's been feeling great! We've settled on a good routine and life has been...well easy...or at least as easy as it ever gets around here.

His memory seems to be getting better too. He's counting to three, which may seem like a piece of cake, but the boy fights for every crumb, so it's HUGE to us. HUGE I tell ya.

We've added in occupational therapy again, and already had a therapist change. The new lady seems nice, but she really hasn't talked to me at all, and it's been 4 weeks, so that's causing my eyebrow to start to twitch. I'm planning on pinning her down on Monday for a get to know you chat.

The feet: They've continued on their thickening course, but they work well, so...I dunno.

The neck popping: (Did I mention that? I think I did.) He saw the ortho last week, and the bones are fine. Everything is in alignment, there is nothing unusual, plenty of space for the spinal cord, etc. That's good, but I'd still like to know why he's popping. A friend mentioned low spinal fluid possibly being the cause...I don't know, but I think it's as good a guess as any, and so I'm going to mention it to the next doc we see. It really does seem to hurt, and this is the kid that just doesn't hurt.

Which reminds me, he managed to burn his fingers/hand twice in the last week, complete with big, thick blisters and didn't shed so much as a single tear. He did notice he did it though, and kept ice on it briefly, so I'm taking that as progress. Even if it doesn't hurt, at least he knows he is hurt.

He did not burn his fingers making s'mores :)

Brotherly love at it's finest:

Our Last Trip to Dallas (We Hope)

2009-10-09T09:45:00.001-05:00

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Ahem

2009-09-27T17:46:00.004-05:00

Apparently there are people out there who enjoy other people's feet. Really enjoy them. I'm not one to judge, but I don't really think this blog is the place for them to find their....joy. So I've changed the titles of a couple of more recent posts.

The good news is it appears there are people out there googling for information about AOS and they have found this blog a couple of times, which means they have seen and possibly clicked on the AOSupport button. I think that's a good thing!

And there is more good news! The developmental pediatrician hit the nail on the head once again. The medicine changes he made have given us glimpses of the boy we once knew. It was a bumpy week changing things over, but the last 2 days have been fabulous. We're trying to give Isaiah ways to tell us how he's feeling and what is happening in his head, and one of those descriptions is his head "going fast", which is a very uncomfortable and bad way for him to feel. He's come to me twice over the last two days with a smile on his face and told me "Momma, no go fast!" while holding his head :) We've had to make a couple adjustments to dosages, but I think we've got it this time by George!

See Zee Shoes!

2009-09-21T13:01:00.006-05:00

Well, one pair anyway. Both pairs fit him with room to grow (and hopefully he will!), but most importantly he can get his feet down inside of them!!! I spoke with Lori at Keeping Pace, and she was fantastic at helping me measure his feet and correctly guessed the sizes and styles he would need. She even told me I would have to take out 2 of the insoles at least, but she thought we could probably leave one in for now, and she was correct! They just fit with one insole inside, but at least we have growing room that way too...hopefully he won't need it. He got these and these. He's so happy to have real shoes, he's walking around saying "Like Laney Pooh's?" and "Like Sissy's?" Guess he really wanted shoes like everyone else has :)

In other news, his developmental pediatrician rocks. I could kiss that man every time we leave his office, lol. I took Zay in to see him on Wed. and he was alarmed by the neck popping and sent us right over to the imaging center for x-rays. Thank goodness his spine is not pinching anything, and his vertebrae look ok, but we're going to be seeing an ortho soon to try to figure out why he's popping and why it hurts. I'm just so relieved and thrilled that he listened to my concerns, but he always does. In fact, he may be the only doctor we've ever seen that does that.

The developmental pediatrician also changed Isaiah's meds for his "anxiety and ADHD" and although the switch has been a little bumpy, overall he's doing much better. I have high hopes for the next week and beyond.

Those Things At The End Of His Legs, Part 2

2009-09-15T17:37:00.006-05:00

Just posting these so I don't lose them :P His feet are getting thicker and thicker. I ordered him orthotic shoes today because after a month of looking we couldn't find any regular shoes his foot would fit down inside of. I'm going to try to take a monthly picture because I believe they are getting thicker pretty quickly. Unfortunately, they are not getting longer.

Today, September 15:

The end of April:

Chugging Along

2009-09-15T08:15:00.003-05:00

Geez, it feels like it's all glum news lately. I still have heard nothing from the pediatrician or neurosurgeon's office about his loose ligament and neck popping. I wish I could say I'm surprised, but I'm not. We're hanging in there, keeping him dosed with motrin and hoping that the developmental pediatrician can do something for him on Wednesday. I know he will if he can, he's a great doctor.

Last night he got his first goose egg since surgery. His brother helped him out with that one, lol. Poor little guy did the whole crying with no sound thing, and I think that may be the first time he's ever done that. Sure, he's nearly cut off a finger here and there, had gushing gashes on his shins, shut his hands in doors...all that fun stuff, but none of that ever hurt. It only hurts when it's his head, and boy did it hurt last night. It took him a good 30 minutes to recover, and in the meantime he got hives all over his body, rolled his eyes around in his head and had spurts of hysterical laughter. Good times.

I think it's time to address the obvious-to-everyone-and-his-monkey ADHD. I'm concerned about how his heart will handle an ADHD medicine, but I'm also concerned with his quality of life. Right now hiding in the house because he can't handle being in public is a huge check mark in the "no quality" section of the pro/con list. I had hoped that we could put it off until he was able to communicate what is making him feel better and what isn't, but it's going to be awhile before he's able to do that.

Take Two

2009-09-01T18:10:00.003-05:00

My mom pointed out to me that in the last video it looks like Isaiah is going to sleep and he just has sleepy eyes going on. I didn't think of that, because, well, he's not sleepy right now, lol. So I took another video of him watching TV. He does this when he is not watching TV also, it's just that it was easier to catch him on video sitting down. There was bribery involved in getting him to watch TV. Many sweet tarts were involved ;)

Oh The Quirks

2009-09-01T17:30:00.004-05:00

I took Zay to his pediatrician yesterday because the popping in his neck was starting to hurt. The doc examined him and said it was a loose/rolling ligament. It wasn't until after we left the doc's office that it dawned on me that the many changes in his behavior started happening at the same time his neck started popping with every movement up and down. I think I wrote here about how different he was after surgery? Well, things have sort of gone down hill quickly, and I just was along for the ride, never really doing the math.

His newest neurological quirk has been going on for about 3 days. He's been blinking a lot. I don't know if it's a "thing" or not, but I'm putting it here so I can remember it later. We go back to the ped. tomorrow, hopefully I'll know more then (and be able to write a coherent post).

That is "Diego" and "Dora" he's talking about :)

Those Things At The End Of His Legs

2009-08-21T16:21:00.006-05:00

Isaiah is very lucky that his hands and feet have only very minor differences. Some kids with AOS don't fair as well. Both his hands and feet are thick and baby-ish looking, but they work fine (though I have a very hard time finding shoes for a 5 year old with fat baby feet). His toes are a little weird, more so on his left foot than his right, but man if they aren't the cutest little things!

See for yourself :)

This is his cute little right foot. Toes are kind of short, but pretty normal looking, though they are set in a zig-zag pattern.

This is his left foot. See how the 4th and 5th toes are smaller than the rest and smaller than the same toes on his right foot? The 2nd and 3rd toes are very close together while the others have spaces between them that the toes on his right foot don't have. This foot also has the zig-zag pattern going on.

The zig and the zag on his left foot (it's the same on the right foot). You should see him wiggle them piggies, it would make the sourest face smile.

5 Months Post Op

2009-08-10T19:38:00.006-05:00

Top

Left Side

Back

Right Side

Stickers

Still Not Done

2009-08-10T15:41:00.002-05:00

We still have not managed to complete Isaiah's OT evaluation. We went in last Thursday, it was supposed to take an hour, but we were at it for an hour and a half and didn't get finished because of his behavior. The good news is he was on full display, so the OT got to see what I'm most concerned about, which is his lack of social skills/boundaries and his "neurological quirks", i.e. eyes rolling back, inability to focus his eyes, zoning out...looks a lot like a seizure, but it's not. We were to finish up today, Zay willing, but it didn't happen, the OT called in sick. Hopefully we can get it done next Monday so that we can get this train rolling.

Small Change Of Direction

2009-08-05T08:58:00.002-05:00

Instead of this blog being devoted to Zay's head I'm going to devote it to Zay in general. He's got a lot going on, and I need to document. Because Adams-Oliver is still on the unknown part of the map of genetics it is very important to not only Zay's care, but for those who will come after that I try to remember and keep track of as much as possible.

We're going for his occupational therapy evaluation tomorrow. He's been in and out and in and out of OT since he was a baby. His issues aren't really ones that can be worked on once a week, they are daily issues and his OT has been fabulous at helping me figure out how to help him, even when she's not been seeing him on a regular basis. It's been...about a year and a half, I think...since his last eval. I thought he was still chugging along on the OT front, but then his developmental pediatrician did a full eval and the results were stomach sinking. He's always been advanced in the major muscle skills, what with him breaking doors off of hinges and climbing like a mountain goat, and he still is. However, everything else is off the charts the other way. So much so that the dev. ped. recommends he not even try to start K this year as his birthday dictates he should.

I guess I've been able to stick my head in the sand because of how busy we've been with other, more immediate issues. He just is who he is and we just parent who he is, if that makes any sense. It's been so long since I've had an "average" kid that I don't realize just how far behind he truly is. But when they tell me that my nearly 5 year old functions as an 18-24 month old...well.

Our goal is to help him be the best he can be, not to change him into society's version of what perfection is. However, I...we, have been lax in that area, and now it's time to get down to business again, and tomorrow's eval will help point me in a new direction.

Two Months!

2009-07-15T21:42:00.005-05:00

In the two months since I last updated Isaiah's "seams" healed completely. All was well for about a month and a half, and now we're back to fragile scar tissue. The good news is that it's just sores on his head, not a deadly infection waiting to enter his sagittal sinus anymore. We're still happy with it, his skull is fixed and there is less scar tissue than there was before even if it is still easily torn and slow to heal. His hair is finally all one length too :)

He's A Knot Head

2009-05-11T07:18:00.002-05:00

Well, technically a knot neck, lol. I took him to the pediatrician last week because he has a rather large knot on the back of his neck. I figured it was a lymph node, so I wasn't too worried, but he kept touching it, and when I'd ask him if it bothered him he said yes. Since he doesn't really feel pain below his head and he can't communicate what it feels like I decided to have it checked out. As it turns out he has a lot of swollen lymph nodes on the left side of his neck and chest. The pediatrician believes it's his immune system starting to hit the spots that haven't healed hard and heavy with white blood cells. He still has 2 spots along the incision, on the left side of his body, that aren't healed completely. The body is amazing. Hopefully those white blood cells will work well and I'll report back with an ALL HEALED shortly :)

From The Front

2009-05-04T16:33:00.000-05:00

Sissy helped hold him down so I could get a picture of his face, lol. He's got a pretty thick scar on the left side in the front that his hair doesn't cover, but I expect it will be less noticeable as he grows.
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We Have Hair Growth!

2009-05-04T16:23:00.000-05:00

It's really taken off in the last week and a half! He has 2 small spots that are scabby still, but...they have scabs!!
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Still Healing

2009-04-22T16:50:00.004-05:00

Seven weeks after surgery and there are still about 5 spots that aren't fully healed. I was really hoping that once the scar tissue was removed his skin would heal normally, but it's not to be. His hair is growing nicely though.

The Picking

2009-04-09T13:32:00.002-05:00

Despite our best efforts to thwart the picking he is doing he now has not one, but two open wounds on his head. He does more than scratch the scabs off. We're wracking our brains to come up with a workable solution that we haven't already thought of. If it all fails I guess I'll call the doctor and see what he says. It takes him 10 seconds to go from mostly healed to a gaping, bloody wound.

Introducing...

2009-04-05T10:43:00.004-05:00

Hero SuuuupahmAN! Hero for short :) Zay's new puppy, a gift from his first mom. He's a sweet little thing!

Ugh

2009-04-04T11:54:00.000-05:00

He scratched a dime size hole in his scalp last night. He completely scratched off the scab on the top/back of his head and then some. We're just sick.
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Mr. Grumpy Pants

2009-04-03T09:54:00.000-05:00

Getting up at 3am will do that to a kid. Everything is great though. We're to keep putting ointment on the spots that aren't healing as quickly, train his hair to cover the scars, and come back in 6 months to do a vein check!
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No Go

2009-03-27T20:26:00.002-05:00

We got up at 4:45am today to get ready to go to Dallas and found that the oldest 2 kids were really sick. They, and the babysitter, got food poisoning from the pizza we got last night. No way was I going to make them sit in the car for 10 hours today with severe stomach pain and...other symptoms. So we have a new appointment for 9:15am next Friday. That means we'll have to leave here at 4:15am. It also means that Zay doesn't get to go to speech therapy on Monday, which in his opinion is much, much worse than getting up at 3:30am to leave for the day.

Looking Good

2009-03-24T09:59:00.003-05:00

Most of the stitches on the top of his head, where the hair is short, are gone. There are a couple of places on the front of his head where they are still hanging on, and two places where they came out too early and he's got scabs, one of which you can see in this picture. The two spots where it was very lumpy (where the "rind" from around the expanders had to be used) are already starting to flatten out a bit.

I say in another 2-3 weeks his head will be covered in enough hair (hopefully it's all still curly!) to hide all of the scars.

He wanted to go into the therapy center to drop W off yesterday, and one of the newer therapists who didn't know him pre-expander couldn't believe how good he looked, lol. He's ready to get back, but we have to get a release from the surgeon on Friday when we go back for a post-op so he can go on Monday.

Pictures From Today

2009-03-18T16:31:00.004-05:00

It's healing nicely, I think.

He fell asleep wrapped in Sissy's blanket.

He wanted to try wearing his Spider Man cap to go to the store with Daddy. Hopefully it won't be too uncomfy.

The Problem Spot

2009-03-16T15:26:00.000-05:00

Where the three sides come together in the back it keeps bleeding.
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Update

2009-03-16T15:24:00.000-05:00

Cranky Pants wouldn't look at the camera, but you can see how well he's healing.
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Sitting Outside Freezing

2009-03-11T19:36:00.000-05:00

I really need to start wiping his face before I take pictures. It seems he ALWAYS has food on his face these days though.

He bled a little bit from one spot on the incision today. I don't know if he did something to it or if it just happened. It wasn't bad though, and it seems ok now.

I measured today and he has a total of 16 inches of incisions on his little scalp. It will all be covered by hair in a few months, but about half of it already is. In fact I didn't realize how many stitches he had until yesterday.

He's only asking for itchy and pain medicine once a day :)
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The Incision

2009-03-10T20:10:00.001-05:00

The cut goes much further down than I had realized initially. The tip of my finger is at the end of the incision on the left side of his head. You can see the drain hole to the right of my finger.
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Dents

2009-03-10T20:05:00.000-05:00

Since I cut his hair we realized he's got dents on each side of his head where the expanders were. I'm sure it will even out eventually, but Zay thinks they are funny right now.
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Taking A Nap

2009-03-10T13:59:00.000-05:00

Or not. I cut Zay's hair today, and I washed it off again. There is still quite a bit of blood, but we'll have to do it slowly. He's not itching as much now that the bandage is off, and he doesn't seem to hurt at all now. I've got bandages for him, but he doesn't keep them on, and the nurses said it's ok to leave it uncovered in the house, so we are. I think that's better for his unique skin anyway.
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Isn't He Handsome?

2009-03-09T16:43:00.005-05:00

We washed him up as much as we could without rubbing anything, so it's still kind of matted. The pics aren't very good, but I think that's ok, because it doesn't look quite as rough then, lol. I'll post the picture of the front, but you'll have to click the link at the bottom to see the back. I don't think it's too close and therefore not too detailed, but you might not want to click if you are squeamish (I'm looking at you, Jacque and Mom).

Click here for the back view.

It's Off!

2009-03-09T11:49:00.001-05:00

I won't post the bare head picture, although it looks beautiful to us, it's on the gruesome side right now. The drains and cheek stitches are out, and he only made the slightest face. The stitches in his scalp will dissolve and it will take about 6 months for the "rind" (where the edge of the expanders were, the skin is thicker) to flatten out. But there is hair all over his head, no hole in his skull, and no dilated veins!
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The Last

2009-03-09T09:05:00.000-05:00

"Hat" picture...hopefully. See the hair sticking out? He's scooted the whole thing around. Please ignore the chocolate on his face. It seems to be a permanent fixture of late :)
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Update

2009-03-08T20:47:00.002-05:00

He's been in more pain today than he was yesterday, and he's itching like mad. The itching is good, and normal, but no fun. He's managed to scoot his "hat" back some, and today has more swelling and the stitches on his cheek are now exposed, whereas they were under the gauze yesterday.

We're hoping that he will feel better after the drains and bandages are off tomorrow. I'll send pics sometime tomorrow. Probably after we get home and get him cleaned up some.

Eating

2009-03-07T19:50:00.001-06:00

And eating and eating. He's been an eating machine since Thursday. His "hat" is now covered in chocolate, and various other food items. Good thing it only has to last 2 more days, lol.

In other news, his vocabulary has made a HUGE leap forward since Thursday. It's really amazing. Also, his behavior has made a significant change for the better. He's calm, cool and collected...even agreeable. I don't know what part of the surgery has incited such huge changes, but we hope they stick around.

Here's a pic of Supah Zay (notice the cape?) doing, what else? Eating of course.

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Yesterday's Posts

2009-03-07T08:14:00.003-06:00

I sent two posts by crackberry yesterday, but they were eaten by the interwebz apparently. They will probably show up as soon as I do this the hard way.

He did have some pain yesterday, but regular Tylenol took care of it. He did too much and he's had a little more drainage than the day before, but we expected that. We'll do our best to keep him sedentary and occupied today (those of you that know us IRL will be laughing right now). He ate his weight in chocolate yesterday, apparently he's making up for the 2 days of not eating still.

Lane stayed an extra day with Grandma and Grandpa, so Zay hadn't seen him since last Sunday. He got home while Z was napping, so when I got him up and he saw Lane he shouted "My Laney Poo!!". They were pretty happy to see each other and sat on the couch together like this for awhile.

Home And Some Sad News

2009-03-05T17:16:00.002-06:00

We are finally at home! It's messy, and I forgot to run the garbage disposal before we left, so the kitchen smells funny, but it's H-O-M-E!! Zay just keeps getting better and better, and we are all amazed.

While we were having a cake walk, little Brenden's family had to say goodbye to him. While I've been concentrating on my little guy, my thoughts have been with the Pleitez's often. I feel incredible sadness for them. I am more determined than ever to get information about AOS out there not only for other parents, but for the medical community who seems to know very very little about it. I just have to figure out how to go about it.

Thank You Max

2009-03-04T18:19:00.000-06:00

Turns out playing with a cousin gets Zay out of his funk ;)
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Mommy's Turn

2009-03-04T14:22:00.000-06:00

'm exhausted, but enjoying the cuddle time.
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Napping

2009-03-04T13:20:00.000-06:00

Who needs a bed when you have Daddy? We're hanging out in TX today, and if all is well we'll go home in the morning.
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Ready To Go

2009-03-04T08:00:00.000-06:00

He's playing with the bed and waiting on the discharge paperwork.
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Chlorine And White Sheets

2009-03-04T04:56:00.000-06:00

That's what his allergy bracelet says. They took his allergies seriously from the time we set foot in pre-op this time. They made sure he stayed off of the sheets, even during surgery. Then yesterday they brought him some special, chlorine free sheets, pillow cases, and towels.

I wonder if that has anything to do with how much better he has felt and how little swelling he has this time compared to last time. The surgery was MUCH more invasive, but he didn't battle hives while he was recovering this time. I don't know *shrug*.

We are so impressed with this hospital. Everyone (minus one particular social worker) has been so nice and helpful.
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Woke Up For A Snack

2009-03-04T04:31:00.000-06:00

Notice how little swelling and bruising he has? He looked like a blow fish with 2 black eyes by this time after his last surgery.
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Rockin With Momma Hey

2009-03-03T15:37:00.001-06:00

We went to the play room for a bit and now he's tuckered out.
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Dozing Off

2009-03-03T11:07:00.001-06:00

He's really sleepy most of the time. I don't think he's ever been so quiet for this long before.
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Trains

2009-03-03T09:11:00.002-06:00

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Looking at the trains

2009-03-03T09:11:00.000-06:00

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Doing Well

2009-03-03T07:42:00.000-06:00

His throat is still sore from the breathing tube, so he's not in the mood to eat and drink. But they took his last IV out early this morning because his arm was swelling, so he has to drink and eat. The doc said they will release us tomorrow morning as long as he's taking in enough by mouth.
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Eyes Open

2009-03-02T18:01:00.000-06:00

He's awake and so far not in any pain. He's bled through his bandage in a few places, but over all he's doing well.
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Resting In His Room Finally

2009-03-02T14:10:00.000-06:00

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Wow

2009-03-02T12:30:00.000-06:00

No ICU! He's going straight to the regular floor, we're just waiting on them to get his room ready. He's doing well, and they are managing his pain much better than last time. He's sleepy, but alert, and he's already downed 2 boxes of juice. He only lost a little over 2 units of blood. They replaced 2 units and made up the rest with other fluids. He's cold from that, but he's warming up slowly.

We couldn't have asked for this to have gone any better. This is just awesome!
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All Done!

2009-03-02T11:18:00.000-06:00

It went really well. Better than expected, according to the doc. We're waiting for them to get him settled in recovery (I think, maybe they are going straight to ICU) and then we can be with him.
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Almost Done!

2009-03-02T10:23:00.000-06:00

The nurse just called from the OR and said he's doing well, they are almost done and they didn't have to split any bone! They were able to use the bone substitute! The doc will be out to talk to us in about 30-45 minutes. Much faster than we had been told. Maybe it will mean a little less swelling and bruising since he won't be laying face down for the 4-6 hours they originally thought it would take.
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He's Back

2009-03-02T07:54:00.000-06:00

They just took him back. The nurse said she will let us know when they start the procedure, but it may take an hour or two because they have to put in a couple of IV's and an arterial line.
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Silly Juice

2009-03-02T07:35:00.000-06:00

He's feeling much better :) They will be starting surgery soon. The scheduler told me 11:30, LOL. It will be between 4 and 6 hours until he's done.
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Watching Sponge Bob

2009-03-02T06:55:00.000-06:00

Turns out putting on the pj's was more traumatic than drawing blood. I guess he knows we're staying when they make him put on the pj's. He's ok, just tired and cranky.
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Cranky Britches

2009-02-28T15:50:00.003-06:00

I tried to take before pics today, but he wasn't having it. I decided not to worry about cutting his hair since he's so cranky and I'm not feeling up to the fight. However, he did decide to take a bit off the front all by himself. See?

It's On

2009-02-27T12:20:00.002-06:00

Zay hasn't run a fever in about 24 hours, so he will be good to go Monday morning. I should be better by then too. Terry just started feeling bad today, but thinks it's allergies, lol. I called the nurse to make sure that we could be with Zay in the ICU if we were sick or had been sick within 24 hours and she said yes as long as we wear masks, gowns and gloves. So, whether we are well or not we're going to do this!

Getting Better/Brenden

2009-02-26T07:56:00.008-06:00

He seems to be feeling a bit better, so I'm hopeful he'll make tomorrow's deadline. I'm not feeling so hot, but I think I'll be better by Monday, and hopefully nobody else will get sick. Cross your fingers and toes for us.

I plan on cutting his hair and taking a last set of "before" pictures this weekend. I can't wait to post the "after" pics too :)

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Little Brenden also has Adams Oliver Syndrome, and is really struggling right now. Please send up some prayers, light a candle, dance a jig, or just think some positive thoughts for him.

Monday!!

2009-02-24T12:00:00.001-06:00

He's sick right now, but as long as he's better by Friday then he will have surgery on Monday morning!! Finally!

Update

2009-02-22T09:25:00.003-06:00

Yesterday evening we noticed what looks sort of like a little blood blister on the bigger squishy bruise. The skin also feels like a scab on that bruise, and I'm not sure if that's good or bad. I do know it will make it easier to scratch off, so we're trying to keep it protected as best as we can. Notice how much hair is now gone. Every day the skin is getting thinner and more delicate looking.

Still No Surgery Date

2009-02-20T15:36:00.002-06:00

I finally spoke to the scheduler yesterday because I tracked her down through a nurse. Surgery will not be Monday. She told me that she's trying to get him in for next Friday. We'll see. I'm sure she'll let me know just after we're too late to get on the Ronald McDonald House list. /sarcasm

The bruising remains steady on the back side of the stitches, but on the front it's gotten worse and continued to deteriorate. That skin was deemed unusable by the surgeon last week and now the unusable portion is bigger. And that is what really ticks me off about this scheduling ordeal. He's losing skin now instead of gaining it, and we're in danger of being forced to do surgery in an emergency setting. If we'd wanted to do it in an emergency setting we'd have just waited until he finally opened up the SP on his own or until it got infected.

Oh, look, another vent *blush*

Wee Vent

2009-02-17T12:16:00.006-06:00

While the doctors and nurses at the surgeon's office have been super great and helpful, the lady that does the scheduling has her head in her rear. She's working on it now, but he should have been on the schedule for this week (so says Nurse Awesome). She's trying to work him in on Monday, but if she can't it will be the following week, because Doctor Awesome is set to become a daddy on Tuesday (yay!). I am comfortable saying that Zay won't make it another 2 to 2 1/2 weeks. If things keep going the way they are I'm not certain he will make it until Monday before his skin busts open.

The skin over the squishy bruise is deteriorating rapidly. It's swollen, the hair is gone, teeny tiny blood veins are now visible and it looks like he has a honeycomb under his skin. It looks bad. So bad in fact, that you can actually see some of the bruise color in pictures. Click on the pics to see it up close and personal if you want...but it's gross. You have been warned.

Just Waiting On Surgery

2009-02-14T08:09:00.002-06:00

So the doctor decided not to fill yesterday, which made Zay VERY happy. When he heard the news he jumped off the table, did a happy dance and shouted "yay!". He then promptly ran out of the room and into the waiting room where Grandma and his brothers and sisters were and announced to everyone "NO NEEDLES!" and did another happy dance. I had to go get him because we weren't done yet, and he came back in and gave everyone he could find hugs of happiness. It was pretty cute.

They went ahead and did his pre-op visit (which we will have to redo if he gets another infection between now and surgery time) and took pictures so that if they can get him squished into the schedule quickly we're ready to go. They were worried about how thin the skin over the bruises is getting, and the doc didn't want to wait more than 3 weeks to get him into surgery. They went ahead and gave me a script for antibiotics juuuust in case, and we have orders to be ready to go at all times in case the skin breaks, or in case it starts bleeding again.

Redundancy

2009-02-12T14:08:00.000-06:00

I have to document this, sorry for yet another sleeping picture. I just can't get over how deep he's sleeping. If he does come to a little he just drops right back off into that deep sleep. He even woke long enough to drink a chocolate milk shake and fell back to sleep.
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See What I Mean?

2009-02-12T13:12:00.000-06:00

In the booth at Taco Bueno, despite numerous attempts to wake him. He would open his eyes and then go right back to sleep. Very unusual for him.
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He Partied Hard

2009-02-12T12:07:00.000-06:00

Now he's exhausted :)
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We're Done

2009-02-12T02:17:00.000-06:00

2 plastic surgeons decided the bruising wasn't too worrisome and want to just watch it. The choking and extra sleepiness are concerning, but I'm not too worried. We'll just watch and wait on that too.

At The ER

2009-02-11T22:11:00.001-06:00

The nurse thought he should have the bruises looked at, and she was concerned about the sleepiness and choking. So we're in Dallas at the ER.
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It's Bruising

2009-02-10T14:16:00.000-06:00

I'm 95% sure. Now there are two more, dime size, spots further back on his head, and they are obviously bruises. The skin on top of the bruises is flaky and silvery, which worries me a little in and of itself, because I'm not sure it will be useable. So, I'm not sure if this is just old blood from the header he took a little over a week ago, or if he's bleeding in-between the expander and his skull. He's also slept a LOT the last 2 days, and he's been choking on his food. Something he's never done, even as an infant. I'm a little worried, but not too much. He's always been neurologically "quirky" and I'm thinking that because he's stressed and scared so often, things which he never experienced before we started this, that's causing his "quirks" to get quirkier.

I've called the nurse at the surgeons office to give them a heads up, but I doubt they are going to be too worried about it.

I keep trying to get good pictures of the bruised spots, but the color just won't show up, even though they are very bluish/purple.

In this one my thumb is pointing at the area where the smaller bruises are, even though you can't see them at all :p The bigger, squishy bruise is in front of the stitches by my finger. You can see that one a little.

In this one my thumb is pointing at the bigger, squishy, bruise and my first finger is pointing at the smaller ones, which you still can't really see. You can kinda see the flaky skin though if you squint and turn your head to the right juuuust a little ;)

ETA, if you click the pictures you can see it better. And these pics were taken yesterday afternoon, the bruising has spread a little now.

Infection Revisited...Again...Maybe

2009-02-08T11:06:00.000-06:00

This morning I noticed that he has a big, greenish, bluish, silvery bump at the edge of the popped expander very near the stitches on top. It is soft and squishy and it feels just like his sinus pericranii. It even feels like there is a hole in his bone underneath, but I can't be positive what I'm feeling is bone and not scar tissue.

I called the plastic surgery Fellow and e-mailed her pictures and she wants to give him more antibiotics and watch it closely over the next 24 hours. She doesn't want to take any chances that it could be another infection. He fell and busted his forehead on that side a week ago, so I think it's either a pool of blood that made it's way between the expander and skull or possibly (but not likely) another sinus pericranii. I only think it could be an SP because of the way it feels underneath.

If it doesn't get worse we will see the doc next Friday. If it does we will go to Dallas before then.

The Aftermath

2009-02-04T10:19:00.000-06:00

It's 10:14am and recovery is underway :)
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Not As Well As Last Time

2009-02-03T12:05:00.000-06:00

He was upset this time, but he's had a rough few days. Sunday he fell and bruised up his forehead, yesterday he had shots and a blood draw, and now today a fill. He needs a nap, and I need a drink :p
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Thumbs Up

2009-01-30T11:44:00.000-06:00

He didn't cry!! He made all sorts of faces, but not 1 tear was shed. He is SO proud of himself!

That's only part of the good news though. The doc said only 2 more fills!!!!!!!!!!!!!!! The surgery scheduler is working on getting us a surgery date!
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Catching Flies

2009-01-30T09:23:00.000-06:00

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Cuteness

2009-01-29T10:35:00.000-06:00

They were waiting at the kitchen gate while I did laundry.

As far as the head goes, we are still giving him antibiotics. It was to be a 10 day course, which would have ended yesterday morning, but it's still flaring up. We'll see what the doc says tomorrow.
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Gah!

2009-01-24T12:12:00.000-06:00

The plastic surgeon's office called yesterday to let me know that they cancelled our appointment on Tuesday and rescheduled the next fill for Friday. That tacks on 2 more weeks to this ordeal.

Last night at dinner his eyes got red and swollen, then the skin around his expander and the incision got red. It lessened after a couple hours, and the skin was normal colored and flaking off by this morning. He's still on antibiotics, but obviously it hasn't eradicated the infection. I don't think we have time to tack on 2 more weeks.
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Hair Cut

2009-01-22T16:29:00.000-06:00

That was interesting. I've cut it one other time since he had the expanders in, but they weren't this big.
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Thinking More Clearly This Morning

2009-01-22T11:08:00.000-06:00

I realized that I left out a lot of details because I was stressed and tired yesterday. A night in my own bed has helped with that. The reason the plastic surgeon didn't do surgery was because the risk of doing surgery without fixing the entire thing, including the sinus pericranii, was more than the risk of infection after the antibiotics started working. He would have only been able to remove some of the scar tissue with the skin he had to work with, which means he would have had to attach the good skin to the scar tissue in some places. That wouldn't have held, and probably would have ended up getting infected. Then there is the issue of the sinus pericranii. I'm not a plastic surgeon, but I don't see how he could have fixed the top of his head and it not have affected it, which could have resulted in bleeding or embolism. So, all in all I know the plastic surgeon made the best decision given the circumstances and I really do trust the guy. He's good. I just have to keep reminding myself of that.

Isaiah Updates

Vacation

Who Ya Gonna Call?

Hi There :)

The *Toe*

We Need Feet Fertilizer

Hair And Walking

Spoiled Rotten

Speech Progress!

We've Been Busy!

They Are Pooped

A Year Later

William's Birthday

His First Mohawk

Zay's Head and Will's Eyes

Snow! Again! (Aka, The Exclamation Point Post!)

Way WAY Back

The Way Back Machine

Now On To Fun

Business First

It's Isaiah's First Christmas!

Making Lemonade

Long Time No See

Our Last Trip to Dallas (We Hope)

Ahem

See Zee Shoes!

Those Things At The End Of His Legs, Part 2

Chugging Along

Take Two

Oh The Quirks

Those Things At The End Of His Legs

5 Months Post Op

Still Not Done

Small Change Of Direction

Two Months!

He's A Knot Head

From The Front

We Have Hair Growth!

Still Healing

The Picking

Introducing...

Ugh

Mr. Grumpy Pants

No Go

Looking Good

Pictures From Today

The Problem Spot

Update

Sitting Outside Freezing

The Incision

Dents

Taking A Nap

Isn't He Handsome?

It's Off!

The Last

Update

Eating

Yesterday's Posts

Home And Some Sad News

Thank You Max

Mommy's Turn

Napping

Ready To Go

Chlorine And White Sheets

Woke Up For A Snack

Rockin With Momma Hey

Dozing Off

Trains

Looking at the trains

Doing Well

Eyes Open

Resting In His Room Finally

Wow

All Done!

Almost Done!

He's Back

Silly Juice

Watching Sponge Bob

Cranky Britches

It's On

The Toe