Is it over? It is?

Wow, a full week with no posts! I haven't felt like doing much of anything except cleaning! Cleaning, purging, tossing, donating, reorganizing... whatever you want to call it. I got on a roll on Monday. It doesn't look like I did too much of anything though since inside drawers, closets and cabinets was where I was. Kids rooms too, so it's not like it's terribly rewarding!

We have too many TOYS! (Shocker, I know...) And since having a lot of toys isn't good justification for a new house we had to donate donate donate! Bags and bags. New, old, hand me downs... all of the above. Make room.

Tuesday I was completely spoiled because Matthew let me sleep in until 11:30! (!!) I think I really could have slept all day because I just kept waking up and falling back asleep, so tired. But when Ian went down I knew it was time to really get serious about waking up! Then I played for a while, games... avoided laundry and then girls night out with the sister in laws, dinner and a movie. SPOILED. Matthew really did pretty much everything on this day. I am a lucky lucky gal!

Christmas was great. We went over to my mom's Christmas Eve to meet Beth's husband's parents who came all the way here from South Carolina. We had yummy food, good company and Dylan wasn't (isn't) feeling well so when Matthew got her to sleep on the couch we left her there and she set our schedule. We were there later than we expected but hardly noticed.

After we ran to Matthew's mom's house to say hi to that side of the family and stayed there later than we expected as well! We were just having too much fun with family all night and couldn't leave either house that easily.

When we came home it was late late and we still had lots of wrapping and putting together to do before Santa could officially come, I didn't get to bed until after 1:00 and Matthew was much later since he hadn't wrapped any of my presents yet!

Christmas morning I was able to hold Duncan off a little before he realized Santa actually came, gave a little chance for daddy to wake up. Duncan didn't fully understand Santa this year. I bet he would have gotten it in a few months. He didn't even get it enough for me to fully use the whole "Be nice or Santa won't bring you any presents" leverage that parents have for a short few weeks a year. Oh well, he's pretty nice as is so...

That said, when he got it? He GOT it! He helped EVERYONE open presents! "MORE presents!"

Then grandma and grandpa came over with breakfast and what? Presents! Big ones too...

Dylan got the big winner present, a personal trampoline with a handle to jump REALLY high (or jump at all, whichever applies!). When my mom asked her what she needed for Christmas I told her to search for special needs and choose something. She did, and it's AWESOME. Though I do think Dylan's a wee bit too short for it. Duncan loves it! He jumps and jumps and jumps. She will get there.

Dylan initially missed the action because she slept in all morning. We decided it was probably best and we shouldn't hold off Duncan because she's been feeling so poorly. The princess emerged around 10:30 or so.

I mentioned Dylan's present specifically, but we ALL got super spoiled again this year. It's just incredible, appreciating our many blessings here.

So cool right? Not necessarily - This is how Santa learned that all those different paths don't really matter much yet. As long as there's a closed loop it's all good!

The beginning of the end

Christmas Eve, grandpa was teaching Ian how to hammer

Christmas Eve, I was trying to get a good picture of Ian's first steps. (Notice all the EAGER girls reaching out, they didn't let him get many steps in.)

Christmas morning - Just the boys.

Duncan got a cool work bench from grandpa and grandma!

Ian wanted in on the action.

Serious business

This is Dylan's toy - BEST TOY EVER

After jumping for a while he said "I tired..." And layed right down. (But not for long!)

Dylan finally emerged as a beautiful butterfly.

She loves he new FP Music table (as opposed to her old FP music table that's just moved in to the bedroom.)

She loved it. She has this thing where when she sees something she likes she looks back and forth from it to you, like "Do you see this?!"

Just cuteness

Later Christmas day at grandmas. Matthew was trying to capture the craziness but I don't think it worked well, you can't see a dozen (or more) people in this picture!

I love to see the temple...

We loaded the kids up in the car on Tuesday night and went down to see the lights at temple square. We had intentions of doing this the other night but didn't end up making it, it was far too late and the kids were done. We planned it for Tuesday, earlier, we had left the house to be on our way by 6:30 which worked out perfectly. We got home close to 9:00.

We parked in a quiet parking garage and started the bundling up process. All the while, Matthew joked with the couple in the car that had pulled up right next to us who had three smallish kids to bundle up as well. It was quite the long process!

Ian was bundled up like Ralphy and he either couldn't move or wasn't interested in moving because he just sat there in the front of the stroller like a puffalump! Every once and a while he would get to leaning to one side or the other and we would tip him back up straight again. Eventually I got the answer and I knew he could move, he got bored while watching the nativity presentation and started messing around with the stroller next to him and patting his hands up and down on his tray! That means for the most part he was entertained. Good boy!

Duncan seemed to really enjoy all the lights and the hustle and bustle of the many (many!) people there. He loved looking around and wanted to go in all the buildings on temple square to see the sights. He also really enjoyed the steaming fountains. He was soaking it all up and having a great time.

And Dylan, well... she was just getting over a rough 24 hours and she slept the entire time. At least she wasn't sad right? Being out in the cold is not exactly Dylan's (or her mother's) idea of a good time. She's pretty easy going most of the time though and played along nicely.

Michael and Megan went with us which was a HUGE help because Michael took pity on the pregnant person and took charge of one of the two strollers the whole time. Nice! I had a hands free evening! (Well, hands free but the camera anyway!)

Afterward we went to Hatch Family Chocolates which is a little tiny chocolate shop featured in the TLC program The Little Chocolatiers. Named this because the owners are little people. The show was incredibly boring and didn't last very long before getting cancelled but that didn't make the chocolate any less delicious! We got a dark chocolate hot chocolate it was about the most delicious hot chocolate I have ever had in my entire life! The bottom had chunks of melted chocolate! Soooo good!

Meanwhile - We have a little walker around here! (Not Dylan though... =/ ) It's pretty darn cute to see Ian waddling around in all his shortness! He is getting very brave and walking here and there... even across the room. The only thing that he hasn't always gotten figured out it falling backwards, bending at the waist would be a good thing. Occasionally he tends to lean back, leading with his head, and fall right on it! REALLY! BONK! He's done it several times, you'd thing he would learn that a simple bend would cause a soft landing on a diapered bum. Most of the time he does fine, but then there's just an occasional lapse in judgement.

Dylan started her new medication Zonegran on Monday night and she had an absolutely horrible night. She didn't sleep at all. I started to wonder if it was the new medicine but she had pulled this same thing when Matthew was out of town and I blamed Benadryl but something else might have been up.

Matthew was up with her Monday night until about 3:15-3:30 and then he gave up and came to bed. Mom's turn. I know she fell asleep around 4:00 but then she had me awake again at 5:00, and again at 7:00. She didn't sleep for a full 24 hours again. She was just sad and miserable. Matthew even took her on a long drive on Tuesday and she only slept for about 5 minutes. Finally, as we got in the car to go look at lights she was out. In fact, in spite of brief moments of awakeness when we moved her from place to place she was mostly asleep. Big fit when we got home and then she slept almost all night. I have her water and a pants change at 6:00 and she slept until 10:00 this morning. She's not having a good time right now though, so something's up... poor kid.

We got the puffalump outfit from Shane and Traci, apparently it was Greg's and I must agree with Traci that it was probably the best $15 ever spent! The pictures don't do it justice!

All set (Dylan's awake... for a brief moment anyway!)

We got the puffalump outfit from Shane and Traci, apparently it was Greg's and I must agree with Traci that it was probably the best $15 ever spent! The pictures don't do it justice

Seeing the big tree and in awwwe!

Our little family, I thought I tucked in the booty a little more but alas... it's not that easy to tuck in!

Michael and Megan

Handsome guys!

Michael getting Ian to smile... that outfit took his personality away. Maybe he didn't feel dignified!

Awwwe cute (Matthew awkwardly trying to hug around the belly... not succeeding!)

Another Michael and Megan for them to save down

Cute big boy and the temple.

I loved this one of Matthew, Duncan's acting all cool and stuff though.

So cute.

Cute puffy boy, watching and listening to the nativity presentation.

My big boys and Jesus.

She was there too... see?

Not too much closer to the fountain now okay?

Headed out, Ian's tipped over.

From the back...

Christmas Cards!

A 'cephaly friend put it best when she said that she did her best sending out the Christmas cards but if she left anyone off of her Christmas card list to please let her know... but that she would feel so guilty she would eat herself into oblivion! I promise, I will do the same thing. Just shoot me an e-mail or note so I can slip one in the mail.

Thanks to my mom for watching the kiddos this morning so I could go to church and actually enjoy the choir program that my husband put together with a few other people from the Ward. It was great, he did wonderful... even though he made me stop singing and laugh every time he looked at me and smiled while his hands were waving around directing!

Only a few more days!

(And thanks to Uncle Michael for snapping the great picture while we were tree shopping. We all look mediocre, but Dylan looks AWESOME!)

EEG results and school program

As I mentioned we went in for another EEG on Tuesday. I think little Miss Dylan just has everyone up there at the Children's hospital pretty confused as to what approach to take regarding her spasms!

When we went on Tuesday in the EEG girl greeted us with a huge "Hiiiii!" Pretty sad when they all know us, even another gal stopped in to say hi when we were wrapping up! So funny. Not good that they remember us, good that they seem to think fondly of us though right? (Bright side!)

The good news (in kind a sucky good news way) is that a few minutes into the EEG Dylan actually HAD spasms. I ran out to get the girl to ask her if she needed to note it on the reading and she came running in, typed, handed me a button to push when Dylan had them and ran out... but they had already stopped. I almost wish they would have lasted a little longer and I would have taken a picture of the screen. When she had a spasm, all of the lines jumped together, then normal, then a big jump again.

She was a good girl though and she fell asleep right after (they tend to wipe her out...) and she slept the rest of the EEG. So did her dad. When they came and pulled off the thingies, the lady was very gentle and she washed the glue out of her hair backwards, instead of just a towel on the head and a good scrub... so we don't get any goofy hair pictures! I prefer it this way anyway!

I left the camera in the car, so cel pictures wouldn't have been as great anyway.

We left telling the gals that we might just be back in a few weeks! They probably haven't quite gotten rid of us yet!

Dylan and I went up to the hospital to talk to Dr. Neuro today and to get a prescription. (The boys were at Ami's which I think has become their second home!) He said that her EEG is definitely abnormal and one of a person in which you would definitely expect seizures but nothing's typical! Again, they looked for Hypsarrythmia, which is where the left side of the brain isn't really working with the right side, but they also look for a few other things... I learn something new every time I talk with Dr. Neuro I swear! Typical IS EEGs also show larger wave patterns consistently through most of the reading, Dylan didn't have this. Also they look for meto-something... wish I could remember the term. Not because anyone cares, but because I like to learn new terms!! It's where a line spikes and another line spikes and another line... there's almost a consistent pattern of spikes in various areas, of course... Dylan didn't have this either! Then the age issue, she's really too old for IS.

So what to do... our Dr. Neuro said he consulted with a few other Dr. Neuro's there and they came to the conclusion that they would let the impact on her development determine how aggressively they attempted to stop the spasms. Since the only impact is that she is wiped out for a half hour after them, comparatively, that's not so bad.

He also mentioned a famous French Dr. Neuro by name who is very adamant that when it comes to Infantile Spasms, if the child has an abnormal brain they aren't worth treating (this would be about 90% of IS cases). NICE! But, yay for our Dr. Neuro who is so completely impressed with Dylan's abilities and development that this is not an option! He likes where she is going and will not let the IS impact her. In fact, I think if we called him right now and said we were concerned about development he wouldn't hesitate to throw a little ACTH at the problem.

Ultimately they decided the first medication to try would be Zonegran which, Wiki actually mentioned being a treatment for IS. Isn't that encouraging? I hadn't heard of it before though my friendly (still seizure free, yes!) IS mom mentioned them trying it with her son as well. on the Epilepsy sites it's mentioned that it works by not allowing the spikes to reach max, in effect, stopping a seizure or a spasm before it starts. Worth a shot right?

Not nearly as many down sides as ACTH. Risks are basically sleeplessness (wahoo!), irritability, inability to sweat (Topamax also has this side effect), drowsiness, loss of appetite and potentially vomiting. Also acidosis (interesting..., not good!) but that they haven't seen any of the more severe side affects through their Neurology group. Clearly the side-affects are not nearly as bad as aggressive ACTH treatment would be, and Dylan can continue to go to school. He told me a few things to watch for, the vomiting would not be good, panting, rash, that sort of thing and we need to call him next Friday (Christmas Eve!) on his cel phone to touch base.

Anyone else find it funny that I have this doctor's cel phone? Good children's doctors are the bestest aren't they?

So we start with the medication as soon as we fill it (hopefully tonight) with half a pill (which they are capsules, this should be interesting!) twice a day. After a week, it's half a pill once a day, a whole pill once a day. Then a whole pill twice daily.

That's good for the Dylan update right? On to other things!

Thursday the kids had their very first school program! Yay! Matthew would have loved to go, but he just couldn't sneak out of work so mommy and Ian represented. Course, as soon as Duncan walked out and got on stage and finally saw me he said "Hi mommy! Where's daddy?" This would be my heart sinking, did you hear it? I don't know if they said something about mommy's and daddy's being there but he was definitely expecting daddy. Fortunately he got over it quickly.

They sang a couple of songs. Well, everyone did but the very young three year olds, there were maybe five young ones, Duncan in this group of course. He just was the naughty kid on stage and then he would clap after all the songs. In between he would sad "Mommy, I get down?" and I would tell him to stay up there next to Dylan. So, truth be told, if daddy had to miss a program, this would probably be it, but next year he might be on the line.

The last song they sang was Twinkle Twinkle Little Star and Shelly (the Aide, and the gal that works the closest with Dylan) turned around to me and said "She loves this one!!" and then it happened. Poor little Dylan had spasms through the song! Get out right?! Curses! It's a good thing it was the last song because she was done.

I explained to Shelly after the program that she had them, Shelly has never seen them, and people wouldn't typically notice. She said Dylan was just BEAMING through practice when they sang that song! Of course she was! Then conked out at the program. I suppose this is probably normal for an unpredictable three year old though!

Yesterday I was in with Dylan doing her thing and Duncan came in and told me he had a package for me. A package? So exciting! (It was his sippy) and then her busted this out "Special yib -ea - rhe - aa (only fast)" I paused, "did you just say special delivery?" and he said "Yes!" and said it again. It was so cute... sound NOTHING like delivery but it's adorable. Some day he will get his delivery of 'delivery' right and I will be sad!

He also says "not yet" as in... this afternoon when we went to grandmas and I said it was time to go "Not ye-eet." Uh, yea yet.

The kids were there while I had an OB appointment. I was really quite pleased to see the nurse open my file to reveal a post-it note that says "Do not reveal sex!" underlined. As I was leaving last time I asked him if I needed to make a post-it note for him and he told me he could make his own. I was happy to see he actually did! I almost brought one anyway! Yay! Go baby Dr.

We got Ian's stocking from Grandma Shirley today! YAY! Now he's matchy matchy with the rest of us! (Where I am not doing se well in keeping her making the stockings I had to have scored a few points in the ease - by shortness and straight lines - of adding IAN's name!

And... almost forgot, Ian's taking a few steps! He gets excited and lunges which gets him nowhere, fast, but he will take a few steps to me when his balance is right. It's adorable! He's going to be all over this place!

Tired girl on the way to the EEG - This is how I ended up leaving the camera in the car.


After the EEG, pretty wicked tired and cute right?


This is Shelly - Shelly is deaf (she has a hearing aide) and always signs to the kids while she's talking to them. I do believe a significant amount of her 'hearing' when you speak with her is reading lips.


There's mom, "Hi mom!" I moved to the mini-chairs in the front row when I saw Dylan's chair out. Me, my belly and Ian, in a wee tiny chair.


This would probably be while all the other kids were singing.




I threw this one in because that cute little guy next to Duncan kept getting a very special head rub during the program. I think it's cute, I hope his parents did too!


These were for Jingle Bells - I like that Dylan's smiling at it.

Smash cake success!

Well Ian's little smash cake party did not disappoint though it was a little slow going at first!

We started with present opening and he had a great time. Maybe not as much fun as Duncan, who's STILL enjoying all the presents, but a great time nonetheless. I think Duncan's still having a hard time comprehending that the new toys aren't his! But we have very few things that aren't community items anyway so, it is what it is, as long as everyone shares!

Then we moved on to the cake. he delicately picked of a little bite after a little bite and finally ended up pretty covered! I think his hands were heavy and sticking together so toward the end he would do his open and shut hand wave and frosting would fling to the floor! Oh, and at one point I had to wipe his nose because I notice both nostrils were close to being 100% closed with frosting... Ewwe!

Also worth noting (but not worth a picture) Ian's poo has been green for two days now. I have a witness. I am convinced that we have a little leprechaun on our hands!

I went to Ian's well child check on Friday to see how my little guy's been growing... er... not growing... and he's a little one! At his 9 month appointment he was in the 12-13 percentile in height and now he's in the 10th! He's still under 20 pounds!

On Sunday we all went to see grandma LouAnn play violin in the community Symphony's Christmas concert. In the words of my (honest) sister in law "Wow, that seems so unlike you and your three kids!" NICE. It's not really something we would have normally done but I think everyone here's learned that we will do pretty much anything for Dylan and I wanted to see how she would do at a symphony! Bonus that there would be LOTS of sisterly help and that Grandma LouAnn was in it!

It far exceeded my expectations.

As soon as the music started she got a HUGE smile on her face! She looked at her dad and then at the stage, and back and forth. Like "do you hear that dad? Isn't it wonderful?!" Her response to the music brought tears to her dad's eyes (and then to mine, because who could watch her respond like that and his reaction without tearing up a little?). Don't tell him I saw though. She sat transfixed for the first several songs. She loved when things got really loud and and the symbols! It was pretty incredible.

I owe a huge thanks to all of the family for managing Duncan (who wasn't in to it... at all) and Ian (who's, you know, one...) while we enjoyed watching Dylan enjoy herself. It was a team effort and I wasn't even on the team!

Tomorrow morning we go for Dylan's EEG. Good times!

Daddy gets a taste...

Ian' gets a taste... the cute picture of him pointing at the cake for more was cut off! He pointed like "Yumm! More please!"

Cute Jungle Buddies cakes. I love the smash cake, they did it in the theme.

What's this?!

Lots of helpers! Can you see how excited Duncan is?!

It doesn't look like he was having as much fun as he really was.

Tildy singing along with the sing-a-ma-jig. There were some super cute pictures of Matilda on the camera but they didn't work out!

Notice me on the floor undoing boxes, Ian just took off! What's more fun than opening presents?? Kiko! Boooo! He crawled away from me, around the couch to find Michael when he walked in. What's the DEAL?!

So delicate at first!

Michael did some 'war paint'

Too many pictures to just choose one...

Before

After

I am a huge fan of butter cream (as you probably well know...) but the fact that it was just floating in the tub and not washing away was disgusting!! We had to drain the tub and give him a shower! You should have seen the ring in the tub! GROSS!