Awesomesauce!

On this edition of 'Milestones You Take For Granted' we have a clapper!! (Not to be confused with THE Clapper 'clap on, clap off' anyone? Though I have always thought those were cool...) One of our little people started clapping, and that little person is DYLAN!! The pickle started clapping this last weekend!

I mentioned to Shelley that it was a goal that I would like to see on her IEP this year, along with a few other suggestions, and she started working with Dylan on Friday. Her dad practices with her patty-cake every night, and I occasionally do as a distraction. Well, I was changing her and clap clap clap clap. What? I did a double take!! YOU CLAPPED! She clapped!

Shelley brought her to the car today BEAMING! She was so excited! "She's clapping!" she said excitedly. I know!

I am on a Yahoo group for Holoprosencephaly support and recently there has been a lot of talk about life expectancy. I am not sure how it came up, someone started it, faced with some not so great information they threw a question out there. I don't really talk about it a lot, I mean, if people ask, we can have a chat... But rarely do people ask. So here it is...

The truth is, we don't have a life expectancy for Dylan (or any of the other minions for that matter, right?). And Matt wont even talk about it (he is so cute...) What we do know is that often they pass in their sleep, very often from breathing related issues, leading with pneumonia. They don't pass FROM Holoprosencephaly, but rather, complications relating to it. We also know of two women with HPE who turned thirty this year. We thought those were the oldest gals... Until recently. Recently we got a message from a woman, new to the support group, and newly diagnosed. She is 37, and has just recently been diagnosed with HPE, she is married and she has 'typical' children. She has hydrocephaly and had a heart issue, learning disabilities, sensory issues and she didn't walk until she was three. Pretty crazy to find out something this huge later in life.

We are very blessed that we haven't dealt with huge bronchial related illnesses with Dylan, no pnemonia, phew! As scary as some of the common colds have been, I cant imagine. As for now, we just count our blessings each day and accept things for what they are. She's great and every day is above and beyond what was ever expected.

Ian loves Buzz Lightyear, he thinks he is the bomb... And takes his nap with a little 6 inch Buzz doll. When we went to Eden's for dinner the other Sunday, he found a BIG Buzz and was carrying it all over the house. I looked online and those big old bad boys are 40$! Ouch! I couldn't do it... Holy moly. His birthday is coming, Christmas. Well.. In true Shannon fashion I bit the bullet and got it on a whim. Ian needs a toy that's his, just his, that doesn't get stolen by his big brother. (Who recently adopted a cool dump truck Ian received as a gift as his very own.) I was just hoping that Duncan wouldn't have the same interest in Buzz.

It was worth every penny. I could not get Buzz out of the package fast enough. And it was in there tight, all the twisted wires tying him down. (I guess so he doesn't run around the store at night trying to steal the display Buzz's new utility belt?) I really thought he was going to have an anxiety attack! He probably was peeing his pants... But that's just what he does anyway so who knows.

He was enamored with his new Buzz. It's adorable. He carries him around all the time.

And Duncan-isms

Duncan found a caterpillar and I was asking him about it after and he said he put it on the leaf, so it can go into a raccoon and then turn in to a BUTTERFLY! Bet you didn't know that's where butterflies come from right?

But, you didn't know bees EAT honey too? I think we have that one straightened out now though...

Also, he was running around with a couple pieces of mail I was leaving on the counter for Matthew and he took a very close look at the address on the front and excitedly exclaimed "Look mom! They have a D for Duncan on them! That means they are MINE!" (Drive anyone?) he was running around a little too excitedly so I told him to go potty, quick! To which he said "Wait, let me post these letters first!" and slipped them each, one at a time, into the slot above the drawer of the end table. "Post" indeed... He's Bristish now?

There was some serious cuteness going on this day that didn't translate to picture very well. But man, was she rocking this look.


Typical weekend morning, daddy snuggling with a couple boys.


Can you feel the love?


Okay - Actually what happened was that I saw the caterpiller on the side of the garage as I was pulling in. I ran in to send Matthew out with Duncan because, ewwww, nasty. I suppose if Matthew hadn't have been home I would have done it myself. But since I didn't have too... (Hey, he does the same thing with laundry!)

VCMV & ABR

Dylan had her tests last Friday and did swimmingly! Matthew took her because Duncan had school, and having the kids ready before I would have left would have been just too much to ask! Matthew had to have her up there by 8:00 to check in. She was scheduled for the full sedation at 8:30. It was the real deal, nothing but clear liquids after midnight, no food at all after 6:30.

As a recap, she was having a bladder study done (we will have to do this once a year) and she was having an ABR test done on her ears because she was missing some ranges in her left ear when they tested using the BEAR test. The bear test is fickle, erring out with movement and with other noises in the room so they weren't sure about how accurate their results (or lack thereof) were anyway.

We are so lucky that Matthew has a job that he is able to take her in and do these things with her. He took a vacation day (and still worked via smart phone) but not all jobs let you take a day here and a day there like he can. I am also very lucky that the is so willing to take her! He is very involved, and I think he would have even been sad to have missed it.

However, having daddy go, I get information like "her ears are perfectly fine" actually he added "her give-a-crap is just busted". (Funny!) But then I get the report in the mail and while her ears are "normal" she is still missing out in some ranges. I have no idea what it means, and we played the range she cannot hear and it's an annoying sound... But I am not sure if we are reading the report correctly. I think I might just have to call my buddy Jen who knows about these types of things. I am sure she will explain it in the terms mommy needs!

And, as far as the bladder study goes, no changes. Neurogenic bladders can go either way, they can get better or worse, thankfully hers stayed the same. She doesn't empty completely so keep on cathing 3 or 4 times a day.

She did great with the sedation and was just groggy for several hours after.

Big thanks to all who were thinking of us and sorry I hadn't had a chance to post the results sooner!

Duncan is just growing before my eyes lately and I can't even stand it. He says too many funny things every day that I can't even keep track... BUT, he does have a little problem saying his L's... Remember how we got a lot of play time out of "bridge"? The other day Matthew and Duncan were out shoppng and daddy said "let's make like a tree and leaf" and then followed with "let's make like a shepard and get the flock out of here." Are you seeing where the problem would be? Yea... Maybe too irreverent to get good use out of!

A couple weeks ago while we were at the cabin Ami took these pictures of our family. There were like twenty people on the sidelines helping out. It was quite the project! I just told her keep on clicking! They turned out great! Check that off the list... For a few months anyway!





This one's my favorite. Look at Dylie's cute little face! She's looking at her Uncle Michael!

Asher's six (seven) month appointment!

As I mentioned, we went to Asher's six month appointment this week and he is doing great. He is 16 lbs 8 oz and 27 inches long, he is slightly above 50th percentile for height (which means his height growth drastically slowed, he was greater than 75th last time!) Good old average there and his weight for height is just above 25% so he's a little on the thinner side. Dr. ped told me I had "trap babies", as in, 'well this one's not so bad, let's have another!' So true.

For some reason this has been a rough round of Vax's for Asher. His leg has a huge swollen spot like a mosquito bite and it's really stiff. Even a couple of days later he has a little fever and his leg is sore. I feel terrible for him, he is such an easy going little guy that when he is hurting you can really tell. Though he is sleeping through the night now, at least 9 hours the last three nights. Woohooo!

Sign language classes are going really well but man, it's amazing to watch the teachers talk to each other, they go so fast. And their spelling! Oh my... Maybe we will be able to spell that fast? Or understand it someday? I think it will probably be a while! One step at a time right? Again, super fun having Matthew taking it with me. We can call each other our fat, short, ugly, dumb spouses in sign. Yes!

And it's already started with Duncan... "What did you learn in school today?" Him, "everything." Uhmmm.... "Who did you play with at school?" Him, "everyone." Hmmmf. "Do you know any kid's names?" Him, "nope!" although he did tell me today two kids were fighting and one cried. I do not believe he was involved (thank goodness...).

My mom came over to watch them when I ran a quick errand and she said "he needs to be in preschool every day! He is busy!" She did say he was a good kid, which he totally is... But man. He wears us all out!

Looks like Dylan's IEP is shaping up to be on the 4th. The school PT, Cindy, will be able to attend at that time, and Michael is planning on going as well so it should be a good meeting of the minds. Cindy came to the car today to ask for Michael's contact information and she said it was because Dylan pretty much blew last years goals out of the park. She did... Just barely in the last couple of months too. She wasn't doing things like standing independently and walking 20 feet when class ended last year and I kind of chuckled about it. She showed us!

Everyone at the school seems so on edge and awkward when it comes to IEP's. It's no wonder they get a bad wrap. Course this will only be number two but people need to relax, we are working toward the same goals right?

Shelly also inquired as to what we want her to be working with Dylan on so she can plan her goals as well. I sent her a little list of what I think might be next on the horizon. She said Dylan was "busy" too, which is an understatement, she is everywhere that kid. Guess I just have busy kids! Wonder if I was "busy" too!

This would be me trying to get a good picture of Dylan. I probably took 50.






I have been on a bow making kick. I figure if I can't dress her (I mean, look at how I dress...) then the least I can do is do her hair and give her bows right?


I even tried to take some pictures in the car... But this was the only real keeper. Sorry pickle.


Blue eyed cousins!

First day of school, and class!

The D's went back to preschool on Wednesday, they are now in a three day a week class and it was much needed! Uhmm... For all of us! He needs things to keep him busy and I was just not doing it for him! He had a great time, he was so excited. The school manager that comes to get Dylan from the car said her grandson is in the same class. he and Duncan had met during the summer and she said they were so excited to see each other again! Cute right? He has a little buddy!

Shannon and Tracy's nephew Spencer is also in the same class, he has Down Syndrome. I haven't seen him there yet since I stick to the car... But hopefully Duncan will get to know him. Right now he doesn't understand what I am saying when I tell him who Spencer's aunt and uncle are... He just gets excited to talk about Charlotte!

Shelley said Dylan did well on school but she had a bad day that day so hopefully if that's a good day, it will only get better! She said she had her walk all the way to the bathroom (which doesn't mean a whole lot to my four fans... But it's really far). She said Dylan was like, 'okay, let's be done alright?'

It's going to be a big year for Dylan I am sure! Her IEP is due in October and we will have to see where she is in her goals. She is now doing really well on the walking goals. The biggest leaps in progress were over the summer! I am sure they did the prep work though!

That reminds me, we need to buy more PT sessions with Mike, we are out and I just haven't had a chance to go in an schedule more.

Speaking of scheduling, major mistake on my part (maybe?) in scheduling Asher's six month appointment. I called to see when it was because he's seven months this week... And, well, yea. They don't have one for him. I know I made them... Because I sat in their office for a while when she was doing the scheduling because it took forever. We were trying to combine Asher and Ian's last appointment, then Asher's six month would be alone, and then together again for Asher's 9 and Ian's 2. That's as far as we scheduled... But, well. Nothing in the system and we only went to the first together appointment. My bad for not noticing sooner but I know, I KNOW I did it. (Repeat after me, I am not crazy, I am not crazy, I am not crazy.) Not scheduling something and/or missing something is SO not like me, no matter how much I have going on. However, I don't save my appointment cards so it is what it is.

We spent some more time on the phone trying to get them scheduled since Dr. Ped's well-child appointments are scheduling into December(!!!). December 23rd actually. She made a squeeze to get Asher in Monday afternoon and then the sweet sweet nurse there agreed to let me bring in all four kids for an appointment in early December. (The D's four year!) Normally they only do two kid's well child appointments together, not four, not even back to back separate appointments. They don't even like them to be on the same day. So yay Eldene.

Matthew and I had our first American Sign language class this week too. Wow. Wow. Pretty overwhelming! Just like learning any other language I suppose! We learned so much in one night, we had to pass off the alphabet, we counted to thirty, we learned colors and then a TON of other random words, including things in the classroom. Matthew and I have been trying to review it all in the last couple of days in an attempt to retain it all. So glad he is coming with me!!

My niece Eden got her Driver's Liscense so she is actually coming down to sit when she can, which is most class nights except a week next month when she has her play at school. She is worth her weight that kid... She plays AND cleans! And we don't even have to pay her! (Winky Eden!)

The class was pretty large, they are splitting it into two but one of the teachers was way late so are doing it next week. They are separating them randomly... One of the teachers has very little hearing, she is an older woman who seems like she would be kind of strict. But you know you would learn a ton. The other guy is completely deaf and he is hilarious, really super funny... And all over place. He was just teaching us any word that comes to mind with little rhyme or reason! Very different teaching styles, both effective. So we will have to see who we get!

We did bring Asher with us and it was fine. He was pretty well behaved and it was a very casual environment so Eden only gets stuck with three kids.

I told Dyaln's aide Shelley that we were in classes and she was very excited. Which doesn't say much, she's excited about everything! She is deaf and has very little hearing from hearing aide's, relying mostly on lip reading. She will be a great resource for us!

Obligatory first day of school picture. Not easy my friends, not easy...


My little cute boy puts toysin his feet to be able to see and playwith them with his hands. He is really a monkey. This toy you push on the flowers to have it play music and he is holding it with his feet and pushing on the flowers with his hands.


My two boys that look the most alike watchign TV. Naughty baby.


This video is so funny, it just shows how silly Ian is. Wait for it... it's awesome.


Here's a video of Dyln walking. She has been all over lately (and this was even a week ago). It's pretty fun having her cruising around.