Cake ordering - FAIL

I think Matthew has successfully removed himself from the cake ordering business though I might see what there was a problem... (don't tell him that).

Back when the twins turned one we were all in the grocery store about a week before their birthday and I though that we had plenty of time to pre-order a cute cake for them so I sent him over with Duncan to choose one. My only instructions? White cake, white frosting, no filling. Here's me thinking giving him creative license would be kind of fun right? Well, many of you remember what we picked up the day of their birthday. It was a white cake, with white frosting and a yellow "Happy Birthday" on it. That's it. LAME! For a first birthday? LAME!

So this time, I send him with more specific instructions; "White cake, white frosting, no filling, no light writing. Feel free to get Thomas or Cars or something fun, whatever you feel like." I was really feeling like the failure in the cake ordering in the past and these specific instructions would equal a success. I was wrong.

Driving him to the airport last Sunday (yes, he left for a week again, I am getting to that...) I asked if he ordered it and he said yes, that he got "Jungle Buddies" and marble cake with raspberry filling. (Do you hear the brakes screeching to a stop here?) "WHAT?" This would be me thinking he was kidding... He said he will call and change it and I said I would, this would be me thinking that he was still kidding and nothing would need to get changed.

A couple of days later he asked me if I called to change it. I hadn't, he was kidding right? WRONG! So I called and the cake lady was totally laughing at me!! "He was supposed to get white cake with butter cream icing and no filling?" "Yes...", "He got a marble cake with raspberry filling!!" Dying here! He really did order it completely wrong.

In hindsight, I am seeing the error in maybe not specifying butter cream icing instead of just "white" but really, white cake with butter cream frosting has been my favorite forever and it's not like we are newlyweds (or didn't date for a decade before that) or anything!

He said that I was laughing and said "White cake, white frosting, no filling, light writing. Hahahaha" Like it would be crazy for anyone to get that! (Not like he had gotten that a short couple birthdays ago or anything...)

So, I am considering that his desire to remove himself from the cake ordering process has been a success... don't you think?

My cute niece Eden came over for a few days this week to help again while he was gone and though she complained that she didn't do much she really did. I just need a tag team partner, she was a good one!

Michael picked up Matthew late on Friday evening which concluded two week single mom time with a couple days of daddy relief in between. No fun... no fun at all! I am not meant to be a single mom!

Smash cake pictures coming up!!

Not too bad after a couple revisions!


Eden and Ian - She took several of these, but this was the only one that turned out (Eden, the camera was on the wrong setting... =) )


Ian on his actual birthday


Ia was trying to take a picture of my BIG brown-eyed boy... he wasn't really having it.


But look what I got when he wasn't looking!

My baaaaaaby is ONE!

And I can't even believe it!! This year has flown by, I am almost in shock... It was a year ago that we anxiously awaited my chubby little bundle of joy. And waited, and waited, and waited. Thank goodness he was cooperative when it was discovered he was sunny side up! He's pretty much been cooperative ever since!

Ian's Info:

Food: Fries, bananas

Toys: Anything that any other child at eye level has. Or, Duncan's belly button, he thinks it's pretty funny... also at about eye level.

New tricks: Waving, he opens and closes his hand (both if you're lucky), claps and makes the cutest scrunched nose smily face! He plays peek a boo by putting blankets over his head. If he's tired he will put it over his head, leave it there and fall forward on his belly... sure sign he wants to go to bed!

Thing to do: Snuggle up, push Duncan in the Cozy Coupe (and get pushed), follow his siblings around. Drive Duncan up the wall trying to get Duncan's trains!

Most ticklish spot: Belly. I think feet too, but that just makes him mad! (A boy after Aunt Jane's heart)

Favorite person: He likes his mom and dad but will dump them in the drop of a hat if Uncle Kiko's around. He follows Michael around the house, it's wierd.

Thing that mom thinks is adorable: His fits are to die for. If you put him on the floor after he wakes from a nap, he looks at you with a grumpy cry face and then plops his forehead right on the floor in front of him. He has to look up occasionally to make a face to make sure you're still looking. He does it when his daddy gets home and won't hold him too!

Ian's been such a joy in our lives, he is the happiest, most easy going little guy. I just adore him, his smile (and they are several and frequent) light up my day. I just have to see his smile with his BIG little teeth and his bald head and it makes me smile. We get to smile a lot around here thanks to this sweet boy.

We will be having cake for him Saturday afternoon, including a SMASH cake! I think he will be super fun with his cake, Duncan was a little timid, there's nothing timid about this boy!

*sniff* *sniff*

No ACTH - Sick anyway though...

We didn't start ACTH this week like I had thought we were going to. Turns out the doctor wants another EEG before we start. I assume because of the cost to insurance they have to have all kinds of justification for it before they proceed and I think he's just hoping that some sort of Hyps will show up. Because of scheduling, we can't even go in for the EEG until the 14th so it will be a couple of weeks before we start. That' scheduled though and Ami's lined up for the boys. No preschool that day because it's a Tuesday but Ami's is practically preschool anyway right?

Paula says the medication is what makes them irratable, not the spasms, but Dylan's not really been the same little person so I still blame IS. I will stick to it. I was hoping to get her on the meds, and hopefully stop them sooner than later since it does change her personality. A little bummed about having to wait. School's the main concern for me, as silly as it sounds, you know you are nicer to a charming child than you are to an irritable one... I need her back to charming so people can fall in love with her. I am just afraid she wasn't in school long enough before the grumpiness started.

And we wait. We wouldn't have been able to start this week anyway... You're not really supposed to start when anyone in the house is already sick. The goal would be to avoid illness right?

Matthew was out of town this week and what a week to be out of town!! We had some serious sickness around these parts and I think I have come to conclusion that it was probably the Rhinovirus. A friend mentioned it and then I looked in to it an too many things line up... Adults don't get it though, which means I am off the hook (yay!) but symptoms can last from 3 to 9 (!!) days!! So, major pukers with Ian Tues and Wed and Duncan Wed and Thurs. Now they (and Dylan) have the 'rhea. Good times.

I slept in Duncan's bed on Wednesday night and at the slightest cough I sat straight up, yanked the poor guy upright and stuck his head in a bucket. Poor kid. Poor mom. All in an effort to avoid the initial mess, "Waaaaaahhhh... I made a meeeeesssss!" And what a mess it was!! OUr first with Duncan!

Not a good week to be on single parent duty but almost all was forgiven when Matthew let me sleep in until 11 today. I think I could have slept all day!

See - good reason to take the week off from blogging right? Things would be easier if I could blog from the iPad but I can't scroll in windows and it would mean even more typos (as if...).

While Matthew was gone my niece Eden as well as Michael and Megan came over in the evenings to help. Eden's quite handy, she's like my little errand girl! I had her decorate the Christmas tree, pick up... she lectured me about reading my three month old magazines so we could toss them. All fun. She's the best hired help EVER.

I mentioned her first job, decorating the Christmas tree and even Matthew said she did a really solid job. She helped me take all the Chirstmas bins back out to the garage for storing until after Christmas. Next week she plans to watch the kids while I wrap all the Christmas presents that are sitting in the Christmas staging area (our front room) it's a mess in there! I can't help myself, shipping notices are like crack when you get started!

Yesterday I crocheted a hat for Michael - He asked for one last year when Duncan got his from Jessica but I never did get around to making it so I was on a mission this year. Jess brought me the pattern and I whipped one out. The only picture I took was on my cel phone though so I could send it Michael - Duncan's my model... I also got the two crocheted blankets done and shipped off to California but I forgot to take pictures. They were pretty cute too... oh well. I think they will be well loved!

Kiko's hat - He had me extrend the sides so the pom-poms were right at chin level. The yarns really pretty too, you can't tell from this picture but it's kind of blue with brown and grey. Nice and warm!


The real tree...


Ian loved it, he just kept talking to it... since then he's pretty much left it alone though.


Duncan was proud of he and daddy's handy work on the lights!


My sick boy watching train videos on YouTube.


Our ornaments this year. Duncan was HOOKED on that train! I don't know anyone under the age of 50 that chooses to put that kind of ornament on their tree... other than us now I suppose. I tried to show him other ones but this was the one he wanted. I am sure he will be happy about that choice when we are packing them up for him to put on his very own Christmas tree!

Snow, Black Friday and Tree Shopping!

Duncan had his first bundle up and run around in the snow event the other day. Matthew took him out with the promise of building a snow man. Well, I mentioned the cold... the only thing they could do was a little tiny, maybe 16 inch snow man. The snow just wouldn't pack. He looked really super cute though (of course).

Jessica and I braved the crowds and went to a couple of stores at 4 in the morning on Black Friday. I bought a lot of stuff I didn't need. (Shocker!) We had fun, fun enough to probably do it again next year! Only a few crazy rude people (seriously, aren't we all in this together?) but for the most part everyone was very easy going. My wonderful husband let me come home and go back to bed, then get up and go to a movie while he watched the littles. YES! Almost done with the shopping, just have a few little things that I need to look for that have proved to be not so easy to find this time of the year.

That afternoon, Duncan and I went to see Tangled with the BIG family. LOTS of little cousins at the show and Duncan did pretty well. Though, at the point where I may have strapped him to the seat with bungee cords Ami provided a new distraction and invited him to sit between her and Jenna. It didn't last long, but long enough and we made it through the show. The show was ADORABLE and I think Rapunzel is a serious contender for hottest Disney princess. She's adorable. Though Matthew said adorable isn't what it take... Belle still has nice stems (if ya know what I'm sayin'). Whatevs, Rapunzel's my new favorite!

We went to get a Christmas tree on Saturday and it was FREEZING! Really, it was cold... 28 degrees! The people at the tree place said they were having a hard time because the trees were taking so long to thaw out when they were unwrapped from being bundled. They drive from Oregon and the trees were cut, wrapped and thrown in the truck. Needless to say, when unwrapped their little frozen branches were stuck up in a weird position. The lady wandered around telling us how pretty they would be in our houses. Hopefully the cold weather won't hurt their business this year... the family has been going there to get their trees FOREVER and they know us, and try to get to know the new us every year! (We grow rather fast...)

It didn't take too long for us to decide on one. Matthew didn't really care (a little surprising...) and so it was done. Right now it's in the garage waiting to come in the house and get some love. Soon, soon...

Last night it was little party at our house with Tracy, Shannon, Charlotte, Michael and Megan... Duncan was WIRED. I have never seen him as crazy as he was. he stayed up way past his bedtime and when he couldn't make it 3 minutes in between driving me up the wall it was time to go to bed! Charlotte fell asleep soon after (she's so good when she crashes here!) and the grown ups (kinda..) played some games and stayed up far too late.

Ready... set...


Go!


I think he was showing me that he was eating the snow.


Definitely eating something...


Duncan and daddy's cute little snowman


My little fit thrower. I can't help but think it's cute... I put him in the living room to go get him a drink and he crawled over to where he could see me (just past the island) and threw himself to the floor. See the veins popping out on his bald head?


Checking occasionally to make sure I am looking.


My life is the woooorrrstest!!


Off for trees! Daddy had to keep taking her to the car to change her so not many pictures of her. This was right after he had her try a candy cane.


Duncan was all about grandma - 'What about this one?'


Nope, moving on... This may or may not have been after I told her Brandon peed on it to make sure no one else would take it!


Over there? Check out Ian's face, he is wondering what in the world Aunt Melissa was talking about.


Just because...


I can't help myself.


He really could care less about the whole experience.


The mini-van gang, all set! I may or may not belong to one of these mini-van and tree combos.


We had a piece of licorice left from the movie to share with Ian


And his face...

Dylan's ACTH update

Paula called me last Wednesday, from vacation, out of state, on her cel phone... She's AMAZING. She wanted to make sure that Dr. Neuro had contacted me since she had forwarded all of Dylan's information and videos to him. I told her she had and she asked if I was supposed to call her, I told her no. The doctor and I decided that she could have her vacation, he would touch base and she could deal with it on Monday when she was back. To which she responded "Well, I am not back until Monday night." Yes... okay! Apparently that was far to long for her to wait until Dylan was taken care of!

She said she was pretty sure she could remotely access Dylan's information where she was to start the insurance approval process on Friday. She was hoping to have medication in our hands and the process started on Wednesday! That's amazingly fast!

I told her we were okay waiting, she needed to have a break and relax, something tells me those words fell on deaf ears.

After much thought, I think we are leaving Duncan in preschool while Dylan's on ACTH. I had spent some time thinking about it myself and then Jess and I went shopping on Black Friday and talked about it some more. Also having thought about t she pointed out that this probably wouldn't be the last time that something like this will have to happen. It also wouldn't be the last time that we will have to quarantine a kids or two away from the others. She's right. And Duncan and Dylan have little interaction really. Ian and Dylan are a different story, so hopefully the little one doesn't get sick.

Jill also made an excellent point that if we were to pull him out, this would be the very last time we could before he actually noticed and knew he was pulled because of Dylan. That's so true. We could totally get away with it, just this once.


So I got him some of that nifty hand santizer that hangs from places and I will put it on his backpack, we have some in the car, and I will just bring an extra shirt and change his shirt when he gets out of school. It's really all you can do right? I am pretty sure the school is careful about washing hands and "making boats" for hand santizer and I personally think the fact that neither of them have gotten sick yet is a great sign!

So I will have to talk to the manager of the school on Tuesday. I know the government is responsible for getting them in school and getting them the best education possible so I am not sure what they will say, I mean... I know it's up to me, I am just not sure if I have to do a waiver or something for a couple of months. We shall see. She's grumpy anyway, they don't want her again until she's happy.

Honestly, at this point... all I want is my happy little girl back too! I thought it was the ACTH making her miserable last time but I am beginning to think that it's a combination of the IS and the ACTH. She has been far from charming for over 50% of the day these days. Poor kid. We figure if she's going to be grumpy and miserable we were going to make it a productive grump and miserable and throw the ACTH on top!

We have Trina lined up for the shot all except 5 days over Christmas where we will either buck up or (more likely) have Suzie come over and do them.

I also wanted to mention that the little HPE guy that I mentioned in my post that is on his third round of IS started Sabril and has been (IS) seizure free for over a week. After 18 months! Mom said she is amazed at how much he is laughing now. I am so happy for them and I am seriously knocking on wood over here! I was so happy to get this update from her (and also her note of encouragement on starting ACTH's miserable process again), I just had to share. So happy for them!

Many Thanks!

It's Thanksgiving time! Time to give many thanks to everything that I appreciate in my life... Okay, not everything, but lots and lots. Would I have time to recognize a each and every thing I am thankful for? Would be nice... But I am afraid I might just be getting started. This will be very people centric... I can feel it already! It's the people in my life that I am feeling so very thankful for right now. I can also tell already that as soon as I am done and this is posted I will think of a million more things or people that I didn't mention! Ack!

I am thankful for my wonderful family, my adorable little ones! I love my sweet BIG boy Duncan who is so smart and learns something new every day. He is so kind and caring to everyone and such a wonderful big brother and helper. He is so very caring and willing! I love it, it's amazing, and I can't wait to see him follow in his father's footsteps. He is on his way! He sings, he tells stories, he jokes around. He is so funny and I love him so much!

I am thankful for my (kinda) big girl who never gives up. She is really an amazing inspiration who keeps facing the trials put before her head on. She really just keeps going, and keeps proving to everyone that she can, she so can, just dare her! At the same time she is wicked feisty and knows what she wants! Every therapy session I am more convinced that she knows that it's helping her, otherwise, there's no way she would put up with all that hard work she has to do! She is so amazing. She has really started to love cuddling, I wish I had more time for the snuggles, but I get them in and I am grateful for this new, very girly development!

I am thankful for my little boy Ian who shows me what super cute means every time I look at him. Seriously, that face? Oh sure, I think he will give me a run for my money someday, but for now I think it's pretty cute when he tries to play with his siblings and ends up in one big tackle pile. When he thinks something the end of the world and he throws his body to the ground and sobs. Or even when he pulls hair, I tell him no, and he laughs. Big trouble some day, I am sure... He has such a strong personality! He also loves his siblings and hates to be alone, he really loves his family. It's adorable that we can tell already!

Also, so thankful for the little one in my belly. Every swift kick to my bladder is welcome... Please kick away, someday I will miss this rolling belly. I am thankfully for being healthy, and for still being pregnant when I know of so many babies, born too soon, who have to fight. Please, stay comfy right there... for a few more weeks mkay?

I am so thankful for my wonderful husband. It's such a blessing to have found my true love who I know will love me through everything. He is such an amazing, kind, loving person and such a great father (so so important) to our kids. He loves his family so much. I always know that I can rely on him for all my needs and he still loves me even though I am a little feisty myself at times. He is such wonderful, kind person. I had no idea I would ever be this LUCKY. (And honey, I did marry you for more than your earning potential, even though it's pretty fun telling you that's the only reason. I will continue to tell you that too since I know you don't read the blog. Love you!)

I am thankful for Dylan's many therapists and doctors. We have been blessed to have people in her life that never give up on her. They can see her potential through her diagnosis and nothing stops them from pushing her to reach her full potential. We were told she would never be who she is right now and never do the things she does and it's because of these people who have randomly come in to her life that show how very very wrong that was. Thank you for loving my little girl, I am so very grateful that strangers have learned to care about my little one and they always have her best interest in mind.

I am thankful for my BIG family! I am so glad to know that I have a dozen or more people that I could call at a moments notice and they will save me from an emergency, an appointment, or a mental breakdown. How blessed we are to have such an amazing support structure! I am lucky that some of my very best friends are included in this bunch of yahoos I call my family. So so lucky. I am so grateful for their support and love. We feel it, every one of us feel it.

I am thankful for my friends, near and far... The ones that I talk to that understand, they just do, regardless of whether or not they have been there (and some actually have). Where would I be without these people, my release!?

I am so glad that we have been blessed enough that I can stay home with my kids every day. I love my little life, even when it's hectic and I have three grumpy crying kids, I wouldn't have it another way. I miss my little family when I am gone for an hour! Our needs are far more than met, what a blessing that is! The things, oh so many THINGS to be thankful for, but they are trumped by the people. Suffice it to say I have everything I could have ever wanted, and more.

And finally, I am thankful for my blogging buddies, all of you that read and care about my little family, Friends, family and strangers alike! I am thankful for the relationships I have built and the comments that you have all made. I am glad you found me, every one of you, and I am glad that you've invited me into your lives as well. You are such a wonderful inspiration. Thanks for caring about us.

I hope everyone has a WONDERFUL thanksgiving day. I know I really can't wait for my red wine vinegar and turkey! Yum! And then there's banana cream pie! (... Oh wait... *wink wink* mom!).

Duncan the turkey he made in school! Happy Thanksgiving!

The game plan, and a new diagnosis - sixth nerve palsy!

Love it when you get the personal phone call from the (not so) retired Dr. Neuro! Did I mention he's pretty up there in age? He's retired except the Spina Bifida kids and he has a tendency to pass out his home number to patients!

Anyway... late last night we finally heard back about Dylan's EEG and the result? No hypsarrythimia. He said there's an undercurrent of abnormal activity, an abnormal electrical pattern, but not the typical hypsarrythimia associated with IS. This abnormal activity is expected due to her abnormality.

I was talking to another blogging mom about her child with Holoprosencephaly and IS and she said that her son never showed the hyps pattern and they are on round three of dealing with it. (The first two times ACTH did the trick but this third time is proving far more tricky...) So I inquired about this and how common it is and he said it's all semantics really, it's just not 'technically' IS without hyps but there's no other name (possibly Myoclonic clusters?). Funny though, doing reading this morning, over 40% have no cause, no hyps... so it's a bit of a confused mess, just like the doctor said!

So, how to treat? He mentioned other drugs that we had spoken about previously, Depocate, Vagabitron (Sabril), Topomax and then ACTH. Normally without the Hyps it wouldn't call for ACTH but we talked about how she responded last time and because there she had no huge high risk problems (high blood pressure, severe infection, swelling, not sleeping) just general crankiness that it might be worth a try again.

He asked how insurance responded last time (given the cost) and I explained how we were super lucky and never had to go through insurance. He said the company is performing robbery so insurance usually drags their feet but they typically end up paying for it. Boy wouldn't that be nice to get done before the end of the year... Hello already met deductible!

Paula is out of the office this week, actually until Monday, since she runs the ACTH program we could try and contact her or we could wait. I opted to wait. The spasms have gotten a little worse and I almost want to see what might happen by Monday. Not way worse... just a teensy bit worse and still no damage so we aren't that worried. The only issue is that she's been very cranky since they started, mostly in the afternoon and evening, but that will only get worse with ACTH so, eh...

What this means... Dylan will be again at a huge risk of infection. (I had forgotten about this part.) She will not be able to go to school. I inquired, and he said that this time of the year he would definitely recommend pulling her out. It's also up to us whether or not we should also pull Duncan out of school. This makes me sad! He loves school! It's really up to us, Dr. Neuro said if Duncan ends up getting sick we would need to "quarantine" him away from Dylan and if he's not quarantinable... then we should avoid having him get sick altogether if possible.

I spoke more with the doctor about this and he was telling me that they used to keep kids in the hospital for the duration of the treatment so they wouldn't get exposed to illness and how this was absolutely the wrong approach! He said, the risk of infection is terrible and the drug resistant strains floating around the hospital just make a bad combination! He mentioned a patient from Japan who was int he hospital two-months for treatment. Can you imagine?

Last time we rarely left the house, definitely no church, we had very few scrubbed up visitors and no Sunday evenings with the family to play with all the cousins. No family? Over Christmas?! Poor little gal, we might just have to send family representation or have some clean =) visitor come sit Dylan while the rest of us go to family activities. But not many. Ugh! We can do this though, it's only for a short amount of time!

He also mentioned another EEG which he admitted would be a pain but it would be nice to have a few more during and after treatment. As I mentioned, he kind of regrets not having a baseline from when they stopped the last time.

I have already asked Aunt Trina to make her daily visits again (oh yea... you bet I did...) and she said she would definitely do it. I thought I would be tough and do it this time but then I got to the part about pulling the plunger out to make sure there was no blood before pushing it in (to make sure it's in the muscle) and I got a little queasy. Blech! This should be done by someone who can do it all as quickly as possible!

The treatment will likely run as it did last time, a couple weeks at full dose with a possible extension of three or four days a couple of times and then the weaning process which is 1/2 dose every day for a week or two and then half dose every other day. We will get all of the details from Paula early next week.

On Monday we went to Dr. Sight and talked to him a little about Dylan's crazy eye. I wasn't terribly concerned about it after our last appointment, he just wasn't seeing it and it didn't require treatment yet. BUT, the school pointed it out again and there is concern for loss of sight in the eye that goes wickity wack. So I made the appointment and went in to ask about it again (we were due anyway).

He still didn't see it. It was certainly NOT lazy and no patching would be required. So we chatted a little more. He took pictures of her to make sure her pupils lined up (interesting no?) and she was doing really well. No loss of sight in her eyes. So what's the deal yo? Well... fascinating enough, he thinks her left eye is the problem, not the right one that turns in. He said it's possible she has Sixth Nerve Palsy.

Sixth nerve palsy is where the outer muscle of the eye is weak, so Dylan's right eye is actually looking at what she is trying to look at but that muscle in her left eye can't pull her left eye to the left to also look at whatever it is. Giving the appearance of a crossed eye, and probably also double vision! She tends to move her eyes when looking to the right but move her head to look to the left because she's really trying to use her eyes together! (Good on her!)

They can operate to correct this, no thank you very much. I know of another little guy who they keep trying to correct the muscles and they throw off the balance of him looking in another direction! Fixing it is probably more important for a "normal" child. The doctor said if she ever drives a car we would need to correct it... Matthew said if she drives a car she can have anything she wants!

Really though, he said that she sees so well together when looking at most things that it's not that big of a problem. Her eye sight isn't being compromised and now that we kind of have a baseline we need to go back in three months to check again.

He also said this is probably while she spins in circles when on her knees, either to turn the direction that she can't see without turning her head (left) or turning the direction where seeing is more comfortable (right).

He also said that we are lucky that she sees well enough to even see that this is a problem. Her CVI has definitely gotten better and he said she really has "CVI plus" because of those small optic nerves. He said most of these kids with the same problems don't see well at all!

That's all that's fit to print on this day. Love to all!