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.

Stuff just falls out...

Last Friday Matthew took Dylan to the SB Clinic as a follow up. I wasn't able to go because our normal sitter for the boys was preoccupied... I mean really? So it's early day... And you have six kids... But still? Wink wink. It was okay though, really we both don't need to go and to her credit, Eden offered to watch them even though it was going to be most of the day. Ultimately we decided to divide and concur and it was fine.

Matthew said her PT was showing her off even though she wasn't very cooperative. No big news from the other departments, nutrition said we were doing great and that we didn't need a multi-vitamin but Neuro said the anti-seizure med she is on can deplete some vitamins and to add one. I think we will go with Dr. Neuro on this one and add a vitamin back in. bummer though because vitamins are yucky.

After clinic she had a renal ultrasound to check out her bladder and kidneys and everything looked good there but we can review with Dr. Water Works next month when she has her VCMG bladder study. The cathing has been going great and no infections (knock on wood) so hopefully everything will stay the same.

A few weeks ago I noticed blood and ooze on the gauze pad around Dylan's button and took it off to see about a pea sized bubble of... I don't know, tissue? It was gross. So I took some lube and a q-tip and rolled it right on back in. I asked on a forum for Tubies and someone suggested granulation tissue built up inside, could this be our first experience with granulation tissue? Either way, everyone there said to call a doctor! I didn't get right on that. It stayed tucked in for a couple of weeks but then there it was again, it became more persistent at popping out (nast) so I called. The nurse also suspected granulation tissue, something that nurses can burn off in office, but because it seemed to be coming out of the stoma, she wanted the doctor to check it out.

So after Dylan's appointments Matthew ran her in to the surgeon. He told him it could be granulation tissue or it could be stomach lining. Uhm... Yuck? Either way he said it wasn't a problem and they can just burn it off with silver nitrate there in the office. So he tried (but it wasn't sticking out as much) and then scheduled a follow up appointment in a month so they can check it out again and hopefully it will be gone. It was gross again for a day (but it had been burned right?) but then it's looked really good for a couple of days so we shall see.

Doctor said "Basically, you have a hole in your body, stuff falls out." and shrugged. Nice!

FYI, this burning of tissue doesn't hurt her. We have had nurses do it a little, but there wasn't this much tissue. Matthew said she didn't even notice. (Dr. Ped even used it to cauterize Asher's umbilical stump, again, gross!)

We actually had PT at the bounce house again last week and it was crowded and hot! Definitely a different experience than last time. Not nearly as successful and as such, no good pics. MIke did comment on how Dylan steps up to standing, you know most toddlers bend at the waist, bend their knees and then straighten their body to stand, using their hands to push up from the floor. He suspects that she can't do this because of the braces and them not allowing movement at the ankle. He said, "I know you said she does this, and I have seen her, but that is so beyond her capability it just amazes me!" Now really, go on your knees, put one foot out and try to stand. Hard no?

Tuesday night we went to the D's preschool orientation where we just dropped off paperwork. For Dylan they had to make copies of some very important ones to make sure the state pays for her education. Really, the kids have a chance to meet their teachers and see their class room but it's a repeat of last year so nothing new there. But, little miss show off was all over the place! Walking like crazy! Maybe because she was kind of familiar with her surroundings? But it was pretty neat. She almost walked right out of the class room door. So funny. I had to sit down and complete a form I somehow misplaced and it's not like I can just set her down and expect her to stay, she went walking off and then she heard Matthew and Duncan coming out of the rest room and she set off to go find her daddy! What the...?

There's a little girl with HPE that walks but I see pictures of her family taking her places in a wheelchair and occasionally letting her out to walk. Naively I was thinking 'If she walks, why the wheel chair?' Oh I get it! I am eating my words. she can walk, but only to where SHE wants to go, not where she should go, or where we want her to! Fine as long as she fits in the stroller...

We will also have to do her IEP early October. Meh.

Ian has taken to knocking on any door he would like to have open. This is his bedroom door after naps, the pantry door... And yes, even the refrigerator door. He used to hit the fridge or the pantry for food or drink, but now I see a little fat fist form and he knocks softly.

And I leave you with a conversation between Duncan and I

"Hop out of the tub, I have a rice crispy treat with your name on it!"
"It has my name on it?"
"Welll... No, I just have one for you"
"Oh, well, you better put my name on it!"

10 minutes later
"You ready to get out?"
"You have a crispy treat with my name on it?"
"uhhh, no"
"Oh, you better put my name on it."
"How will I do that?"
"It will be easy mom, just take the thing and go like that and put my name on it."

(Me racking my brain trying to figure out what I can get away with here... I settle for making a "D" template and using green sugar sprinkles.)

"You got my name on it?" (Insert beaming smile here...)
"Not your name, but a D for Duncan!"
" A D for Duncan? Yay!"

Phew! My little sassy pants!






Duncan in time out. Whenever I send him Ian marches right over and sits right next to him. Me thinks he won't always feel that way about time outs!

Off the grid

We were very brave last weekend and we went... Camping! Well, kind of. Luxury camping where you have a soft bed to sleep in, a (Luke warm) shower and someone else cooking for you over the campfire! It was no hotel, I don't think the floors have ever been mopped, washed or wiped, as Dylan's hands, face and knees can attest) but it was certainly better than a tent that's for sure!

We were so excited to be able to bring (drag?) along Shannon, Tracy and Charlotte. We really couldn't have done it without them since Duncan and Charlotte were nearly inseparable the whole time and we could count on them being watched. We are also very fortunate to have other friends that loaned us their four wheelers, yes, loan. Crazy right?

I knew going into this that we would not be able to do traditional camping things. You know, sitting around the camp fire, letting your kids run around and eat dirt, play in streams, and create havoc all day. Dylan's our wild card, she doesn't walk and I wasn't about the have her crawling around in the dirt (she's far too oral!). From the get go, I knew a lot of time would be spent in the cabin, between her and napping babies I expected to be able to hole up and chill... For a recluse like me, that doesn't sound so bad! But instead we went on a couple of day trips which were pretty fun but it did take us away from the camp.

The first day we went into town to try and remedy Dylan's bowel situation. We missed a dose of Senna and as soon as she lost her lunch at the cabin, I knew she was stopped up. So In town we got ahold of Dr. Ped who said to use Miralax, lots and lots of it.... Until the problem was solved. We started up there camping and continued at home and yep, that was the problem. But she's much better now. Ongoing I think we will do a good solid heavy dose of Miralax about every 2-3 weeks because even when we get her meds right she gets stopped up occasionally. Anyway, because of this she was on a drip most of the time... Another kink in the plan!

After the town and lunch at an adorable little park we went to see The Sinks, which is a place where water rushes into a rock and then goes into a bunch of limestone tunnels, so many tunnels that it takes the water 2 hours to travel a half mile, a distance that should only take 5 minutes. Pretty cool eh? It all comes trickling back out at The Rise, just down the road where trout pool and you can feed them from a deck pretty high up over the river. Totally worth seeing.

The next day we went to a ghost town, an old gold mining town that was abandoned but it's now been done all up for visitors. It was pretty neat but I think we would have all preferred walking amongst old old buildings that haven't been repainted and fixed up... But it was interesting all the same and there were info placards all around the town which provided some great facts. Not enough for me, since I am a junkie... I will have to read more online. They had a ton of little movies and things but really, what four and three year old (not to mention a one and none year old) wants to sit and watch? I figured it wasn't anything we couldn't read later.

Back at camp everyone but Dylan, Ian, Asher and I went for a ride and I got all the kids to sleep, Dylan was propped up on the couch like she was sitting up all cute so I ran to the car to get the camera and I hear a 'shhhhhhhhhh', I look down and there's a screw in our tire. Get out! We are 15 miles in on a dirt road! I wasn't sure what to do so I go walking out to the other cabins and I see Shane and my cousin Randy and I told them. They came walking over to take a peek and told me to pull it to flatter ground. Then, Randy said the magic words. "I tell you what? Why don't you go park this down by your Uncle Dee?" Ha! So I did. those men had the car parked in the shade and that tire off in no time. Then Randy and Shane ran it into the nearest town to get repaired! (Which wasn't a walk in the park, they apparently went door to door in this tiny town to find someone to help!) After a few hours they were back, and it was on, good as new. Awesome. I felt very taken care of!

The last night Matthew and Tracy played a game kind of like horseshoes with Bob and my Uncle Dee and they got schooled... Twice. At one point my Uncle Dee was so confident he started stacking his beers on the blocks that Tracy and Matthew were supposed to be knocking over. Matthew said next time, mandatory coffee drinking to sober them up a little because they were too good while they were drinking!

Sleeping there was pretty crazy! Tracy has a CPAP but he didn't want the generator to keep the camp up all night (even though, I would have loved the steady white noise!) so we made him a bed in the van. It was awesome... The seats folded flat down and we carried the futon mattress out and covered it with blankets and sleeping bags. Well, as a result no one slept! He didn't sleep without his CPAP and Dylan kept everyone but Duncan awake in the cabin! She was having a terrible time breathing. So the next night it was generator time! Matthew and Dylan got the boot to the the van and as a result we all slept a TON better! Phew! Even Dylan did great the other two nights!

Duncan did fall off the bed once. This was the last night, the other two nights I tucked the sheets in tight around him but this last night he didn't go to bed until after everyone else did because he had a nap. Boy did it scare the crap out of us! It was an enormous BANG! And he started yelling at the top of his lungs but back in bed he went and he went right back to sleep. He doesn't even remember it.

We made great time on the five and a half hour drive home, while driving up was a fun adventure driving home was all business! Everyone slept like rocks and it didn't take but a single day to catch up the laundry. (All day, but one day all the same!)

I took a few pictures but Tracy took some great ones so I am hoping to have more pictures within the next couple of weeks!

Child labor!

Last week our family took delivery of an AWESOME Lego table built by Uncle Greg himself. It's a big table with raised edges to prevent mass Lego chaos. it is super cool and measures just right for this Lego plates to line up along the bottom so it will have a Lego surface to built upon. I have been shopping on eBay for cool raised plates and anxiously watching the red auction countdown. So much so, well... I had some restless sleep last night because I was dreaming about... You guessed it, LEGOs! Lame! Guess that's what two days strait of eBay browsing will get you!

Since we are only 25% as far as non-Lego eaters go, it may be a while before it makes itself a focal point in the house, but we are on our way.

Matthew has to decide what to paint it and he was outside with the boys working in the garage when he got a brilliant idea to let them paint too! We stripped them down and off they went. It didn't take Ian long to brush his foam brush up in his hair... He was having a great time. Then Charlotte showed up (with her parents) and she was wearing a cute fluffy yellow lacey number. Off it came and she joined the party!

We got some great pictures of the three of them but I will leave out Lottie's for the sake of modesty!

Off to the tub and then around the block for a non-mother approved motor-cycle ride! Who is in charge here!?

My little fatty fatcakes Dylan has gained weight! I was just thinking that she looks so good, not like a starving little person but just a regular old thin one. Which is good, you could see her shoulder blades a few months ago and we were a little concerned.

She is up to 11.6 kg which is 25 lbs 9 ounces. I think the last time we went in to Dr GI she was at 22. That's great gain over a few months! Over all she is in the 3rd percentile but her weight to height is 50% which is PERFECT. Yay!

I credit the pump! Having the pump allows us to slow her regular feeds enough to where, if we wanted to, we can feed her when she is sleeping. In the past she would wake if we tried to sneak food in because neither of us were willing to sit there for an hour to drip it on in!

We have also been setting her up on 20-30 CCs an hour at night, about an hour after her last feed, until about 2 or 3 in the morning. If we are awake awake we will give her a few ounces over 15 minutes to top her off. So, she is getting a little more food and definitely not missing any feedings. She is also waking up happy most mornings!

We got this growth information at her Dr. Endo appointment, I sent her with her dad and stayed home with the boys. Not sure what all went on, since dad's not like me and he doesn't take sufficient enough notes (for me) but I guess it went well. We officially decided we wanted to keep her small and since we actually have control over this stuff (we give her meds to make her grow) we can do what we want here. Dr. Endo decided we will use 3% as her goal then and work to keeping her right around there for now. 3rd percent as an adult female is 60 inches though, and that's just shy of my height so I hope at some point it will be okay to slow her even further. Course, I wasn't there to ask these questions, but you know... We have time.

Speaking of little miss, she is all over walking. She even stands in the middle of the room by putting one knee up and stepping right on up. Just a couple of days ago she would fall nearly all of the time, failing to gain her balance when she stepped up, but now she just steps up and goes. And most of the time she can even walk over to a toy, lean down and pick it up! Amazing!

So she teeters around, but very much dislikes to be lead by hand. In fact, if you try she will pull her hand away so hard it will knock her right off balance. We are still trying it though, hopefully she will get used to it and be okay with it. Would be nice to lead her on little walks. (very little... Like across the driveway) and I am sure we will get there soon.

The other night she had her braces off because I thought she was going to go to sleep and she didn't. She tries so hard to walk without her braces and doesn't really do very well... Well, I suppose she does pretty good for someone with no calf muscles, legs that don't straighten all the way and ankles that roll in! Hurts me to watch her but when I told her not to, Jessica snapped at me and told me not to dare tell her that she can't do something. She said if it hurt her she wouldn't be doing it! Yup, she's got me there. So yea... Whatever. I am sure she still likes walking better with her braces on, she can go much further! But I will try to stop cringing when they are off!

Awesome


It was hot! Note the red faces and ears!


Charlotte in her yellow lacey number. I think she looks like a super model in this picture with her hair gently swept over her eye.



Aunt Jill brought over Thomas Duplos and these things are AWESOME. We added the Duplos that Duncan got from Jessica and Steve and we are able to make some really fun creations! They are perfect for him, he is the perfect age so major props to Aunt Jill (and Roman and Noah's sacrifice.)