One down! Several to go!

Happy day for us! We got a call from Dr Endo's office to let us know that they got the lab results back and her thyroid level was normal. (That's not the happy part just wait...) Dylan has been on a very small dose of a thyroid replacement med for, like, forever... And the dosage amount has never been increased, just the same old tiny amount. Sooooo... She pulled it! No more thyroid med every morning! (Pending positive lab follow up tests in 4-5 weeks of course...)

Very exciting!! One less med is great! I can't complain too much, we don't have a lot compared to other kids in her HPE family, but any is too many right? Yippee!

I forgot to mention when Dr Endo felt for Dylan's thyroid (and made her puke...) she indeed found one. And that was good news! Also, since we previously determined that we would like to keep Dylan small, very small if possible, we not not increase the dosage for the daily shot for the second time in a row. Great!

Dylan has been having a rough week and for the life of us we cannot figure out why. She will be so sad, so so sad... Like inconsolable for a half hour and then fine for an hour or two and boom, sad again. It's torture watching her be that sad and we don't have a lot of options other than having her go in her room to play for a while. We just keep checking on her and when she can stand us in her presence she comes out again. What do you do?

She didnt nap for a few days, which, she is four after all, and may not nap forever, so? And at night she's been up and so sad, or crying herself to sleep which is not normal either. Matthew and I just wrack our brains trying to figure out what it could be. He suggested maybe an ear infection? She has been a little sick and she's still a binki sucker, so hmmm...

On Wednesday, she was even very sad at school and I got a text saying as much. (I got a call too, but my phone was in my car and I didn't see it until I went to pick them up.) Shelley had taken off her arm braces and her AFOs to try and get her happy again and I guess she was just a mess. I gave in, I text Trina to ask her if she would peek in her ears. Can't hurt?

But then she had an explosion (of the pants variety) and slept for four hours. Straight. Four hours is even a long nap for when she was napping! Maybe it was her bowels? So I called off Trina and said we would play it by ear and see how the night and next day went. Jury is out but things are looking good. I not only feel bad for her but also anyone who is in hearing range when she is that angry.

Aunt Jill cute all of my boys hair last week, she just went down the row and scissored away. It's very handy. We have not been able to talk Duncan into letting us do his hair spiky no matter what we said. "Daddy does it...", nothing. He has always said he likes it down and has been fast to put it down (usually after freaking out). So this time, Jill told him that spiky hair will make him able to run super fast! "Should we try it?" "Yes!!!"

What? Yes?!

So she spiked it and he showed us how fast he could run all over grandma's house, back and forth. We came home and it went on all day long. He was super fast! "Mom can you see smoke!?" Totally. When Matthew got home he was telling Duncan how is so fast he can't even see him when he is running. Cue (winkle!) Duncan running around and around and Matthew looking lost like he can't find him.

It is way cute spiky! I love it! Except... He looks big, like a big big boy. Eeeep!

Asher got very sick, he lost his voice! He had a very pathetic little cry for a few days and wasn't very personable at all. I was starting to think he didn't like me or something but then he started feeling better and getting back to normal on Wednesday and got all smiley with me again, phew!

He has been coughing SO MUCH at night though, for hours, and I figured it out last night. He has a runny nose and he will not swallow his post nasal drip. He coughs and coughs, which doesn't clear it at all... And the he just coughs more! I tried to give him a binki to help him swallow and he won't, he spits his binki out to cough. So I grabbed bottle in the middle of the night and tried to give him a drink, he chewed on it and let the water run out the side of his mouth. Thanks.

As a side note, he keeps chewing on his back teeth and they get molars at one right? You would think I would know this by now!

Last weekend we went to a model train show that Aunt Traci gave us the heads up about. It was crazy! Just a bunch of old men in denim overalls sitting around looking at their trains! It was very low budget, but Duncan loved it. I think he could have stayed watching all those trains for hours. Really. I thought it would be fun for the whole family, I wanted to see how Duncan liked them and I figured Ian would like it, but the whole family meant that we couldn't possibly stay for hours!

We when left I took all the other kids to get them in the car and Matthew made another round with Duncan. We had a front row parking spot and I made one observation. There were a lot of screaming boys coming out of that place! Some were thrown over mom's shoulder like a sack of poptatoes screaming their little heads off. So funny! Made me grateful for my tag teaming and the effort Matthew was going through to try and get Duncan out of there willingly.

I forgot my camera at the show though!! I was so sad! Not only did I want to get pics of Duncan there but I think if I took pictures of everything Duncan would like to look at them over and over. Bummer right? Next year... If we still like trains then!

Here are a few pics from the rain show from my phone. Way blurry. Hmmmf.








And a bath picture just for good measure.

Welcome to the New Year!

Dylie had a couple of appointments last week. We went to Dr. Endo on Thursday and it was pretty quick and easy. Well other than four (really) stinky diapers and a vomit, but hey, that's an easy day for us! We were still working on the bowel issues and I think we have them straightened out, unfortunately, it's all about time of the day. Woo weee! Then, Dr Endo decided to feel for her Thyroid for the first time ever (apparently this had to do with her finally being large enough to actually be able to feel it?) Well... Dylan was about half into her feeding at this point and when you touch her neck, she gags. Which is exactly what happened. And there you have it. Fortunately laminated floors made for a pretty easy clean up.

On Friday we went to the Spina Bifida Clinic to see Dr Neuro and get a new script for her AFOs. But... This is good news. The spasms went away. I really think the issue was just while she was constipated. I kept the appointment so I could get a plan in place for the next time. When I mentioned to Dr. Neuro I thought the constipation was the culprit he actually said this was common! It's a trigger for seizures! He said he has known nurses in homes where when seizures become a problem they try an enema as a first resort and it tends to ressolve the problems. Who knew?

He said if it becomes a regular problem again, lasting longer than a couple of weeks, we can up her by half a pill once a day. That is not a lot! Itty bitty amount, but I am fine with that, we have a plan! He would like for us to do another EEG to rule out hypsarythmia and the link to Infantile Spasms. Because of her age, he is leaning toward these being Myoclonic Spasms. infantile Spasms can damage the brain and are difficult to treat, Myoclonic can usually be controlled with lifelong medication.

When we left I told Paula we will likely make that EEG appointment within a couple of months just because our January has been so stinker busy!

Paula asked about her bowel routine as well because we determined that may have been the issue. I told her Dylan takes Senna and that the Ped said that 6cc's is kind of a high amount and she said that it's a perfectly reasonable amount for her size. Apparently kid's with underlying neurological problems rptend to take more. Well then, there you have it. I messed with it and I didn't even need to. Chalk one up for good parenting!

As far as the new AFOs go, Mike said it's time for new ones. Hers are cracking and her toes are creeping up over the edge. When I had spoken with Mike he mentioned that he would like to see some braces on her that have some flexibility in the ankles but that she wasn't heavy enough for the ones that he was thinking of. In fact, she wouldn't be for a while, 35 pounds is a ways off! He told me to go in and have them cast and then to have the guy call him to talk about it.

So I sent Matthew in to get her cast and he wanted me to call ahead so I did and left a message. When Matthew got there he said he talked to Mike and Mike said "I guess I said something like that..." What?? Not one to leave well enough alone I called Mike on it and he said he guessed he had been so set on the ones he was thinking of not working he wrote off the idea altogether. Crazy... Oh well.

I guess they have a new kind of the same brace that works for smaller children (though she will be the smallest they've tried them on) and he had asked Mike, "If they come in and I feel inspired can do them?" Mike's only concern is that the co-pay for us would be a bit more since they are pricier and to make sure we knew.

Yea, we don't care, we meet all of our out of pocket every year, so what's meeting it that much sooner?

They aren't sure if they will work and apparently, if they don't, they will be a VERY expensive version of what she has now. But, if they do work, Mike says they will do amazing things for her walk. We will see in a few weeks! In the meantime, she can cruise around the house with no braces on now! She looks like a puppet... But she can do it. She comes rounding out of her room, down the hall and into the living room. She is so cool.

Speaking of co-pay, we had her first antibiotic refill this week. Our out of pocket for thirty days was $160, yeooouch! Bring on the new year!

Baby girl went to class on Wednesday and slept the entire time, that's never happened. When we got home she fell asleep at 1:30 and slept until 7! Wow! She never sleeps that much! I was convinced she was sick but when I woke her she was in a fine mood, albeit a little hungry. Hoping for the best here. She even went to bed on time and slept most of the night. Crazy.

Traci and Abbi came over for a craft day this week and we are hoping to make it a weekly fun day! Abbi and Duncan are playing incredibly well lately, what's fun for us is good for them! With no nap Duncan passed out at about 4:30, too late! And when I finally was able to wake him he was a mess! So funny. That kid might take a nap for the next 15 years!

Ian's been talking a lot lately and he started saying "love you!" which is AMAZING! So fun when they sat saying it back! His Woody, of 'Buzz and Woody' fame is nearly perfect. And he is so fun and so interactive we just can't get enough of him. We love watching our boys grow even if it means they are growing up, each step is more fun.

Asher has 8 teeth now, 8!!! And his little bottom ones seem to be coming in even more crooked than Ian's were! He's a wicked fast crawler and is far to busy to play with his mom. *tear*

Duncan is into puzzles in a major way, that's my boy! He loves them and has so much fun. We also recently played Chutes and Ladders and Candy Land with him. He did okay, but it got a little slow toward the end! He is just a busy little guy! He still won't hang on until the end of one of the longer kid books either. It's all go all the time.

Dylan kisses on demand and it's adorable. She has a few very responsive things that she does though she has yet to pick up the high five. (Ian's got it down though!) She will put her arms up when you are taking her shirt off. Just say it and she relaxes her shoulder and lifts her arms. When you put her shirt on she will bend her arms so you can tuck them in and through the holes. She started this one within the last few months and I am VERY impressed. The last is, of course, she will kiss you if you pick her up and ask, though sometimes she mulls it over a bit before she does it. It's pretty cute.

So fun, they are so so fun.

Big Thanks to Aunt Jill this week for watch the boys when I went to the First FAC meeting. She was willing to watch all four kid's but it just ended up that she didn't need to. So fortunate to have able and willing family to help out! Lucky lucky lucky!

Doing a cool BIG train alphabet puzzle. (Our pants tend to go missing around nap time... Oh, and my 'our' I just mean his, don't worry.)


Look who showed up to help! (His cheek is shiney from eczema medicine!)


He was no help...


Neither was Ian


Skinny nekked baby

Mama had a spa day!

Matthew gave me a couple spa treatments for my birthday (last March) and I never ot around to getting using them. We had good intentions... and thought when he was off in December it would be a good time. But it never happened. But last week he called me and said "You have a spa appointment tomorrow at 4." He knew it wasn't going to happen any other way, and well... Since my birthday is coming up he probably wanted to know if it would be a good gift this year too! I asked if his admin put him up to it and he was offended, I didn't give him enough credit!

It started off with a massage and I am not very good at it at all! She kept telling me to relax my shoulders and I really thought they already were relaxed! Really I did. But I guess she would know. I think I just need more practice and we should try again soon. :)

Then we moved to a 90 minute pedicure. I have only ever had one pedicure and it was at a strip mall, and I got to tell you... Not at all relaxing and comfortable. I don't really get how people like them so much they just need to do them every month. That was several years ago... Like 10? And that was probably the last time I had my toe nails painted too! Weird, people touching my feet. Blech!

The aesthetician that did the pedicure was adorable. She was the cutest gal and it was just her and I in the room so we just chatted away. She told me the funniest story about how her neighbor has four peach trees and she asked him if should could have two nice ripe peaches that were hanging over her fence and he told her no! And then came and picked them himself. Haha! How cute was it that she asked? If I have to mow (Wait, I? Hahaha!) around your peach pits I get two peaches! Anyway she made me feel very comfortable and recommended some zichi shower treatment prior to my next massage because that's the only way she can relax for her massages too!

So I already have my next spa treatment picked out. Next time I feel like spending a whole lot of money on not very much! maybe it won't take 10 months? Who knows.

The whole process took three hours! I miss my kid's when I am away from them that long. It's so silly, but I am rarely alone, not even when I am sleeping these days! And if I am alone and not busy? Yea, I need my little busy bodies! Relaxing is boring.

Well, so much for me messing with Dylan's meds to get things on track. Now we think she is uncomfortable and backed up again. Maybe I should have left what was (kind of) working well enough and not tried to find something that actually did work! I had good intentions. She is vomiting, gassy and Shelley said her school day wasn't great. Hmmf. Bring on a mega-dose of Miralax and we will start at square one! Poor girl.

Ian and Duncan have been playing together well lately... Most of the time they are playing and getting along and then there will be a major freak out and I will have to step in but I think Duncan's enjoying his new found little buddy. Dr Ped told me it would be good when Ian was two and even better at three. Pretty fun.

When Duncan gets angry at him he bends over so his face is at Ian's level, scrunched his face and growls! His face turns brit red! It's hilarious! But he doesn't think so... When he does it Matthew tells him to get his face in check and makes him take a few slow breaths. That in itself is pretty funny. I tend to just make him go to his room for a breather and come out when he's done freaking out. The things he usually gets mad at Ian for are hitting, not following the rules, getting into something he shouldn't and trying to take something that Duncan rightfully had first. He is two are all! (And typing this now I see why 'freaking out' is such a large part of Duncan's vocab!)

Which leads me to... Ian is ADORABLE about Duncan. He loves him so much and follows him around everywhere. He wants to be exactly like him! So much so, if Duncan has something Ian needs one, or that one, as well. We have to have two of everything to kind of make sure Ian doesn't have a melt down. Duncan is pretty good though, when I tell Ian that he can have it when Duncan's done it's not very long before Duncan hands it over. Of course, it's far less appealing now that Duncan doesn't have it.

If I send Duncan to a time out Ian pushes by me to sit next to him and then looks at me, at Duncan, then around the room. And sits, like 'why are we over here?' Duncan falls dramatically off his chair, so does Ian. He makes faces at Asher, so does Ian. Where ever Duncan is Ian's not far behind. It's so cute!

They wrestle a wee bit but I can take it, it only gets bigger from here so I better get used to it. Ian even tries to take me down when he wants to play. Nothing like being tackled by a 25 pounder.

Wednesday we went to dinner with my Grandma Shirley and Matthew had to teach so I was on my own which just doesn't work. Grandma said she would get Eden's dinner if she was able to go. When I asked Eden I guess I didn't include the go with us part and she said no need to buy dinner, she could find something. I had to explain to her she was going, she was going to be my nanny where I got to sit back, relax and eat while she chased my kids! It actually worked quite well, the kid's were pretty well behaved and I pawned Duncan off on Shane and Traci right from the start. Piece of cake. Going out is not usually that easy! Been a while since I got to go out and Grandma Shirley was a bonus!

I took my sewing machine class Wednesday afternoon and I really didn't learn too much. Matthew spoils me and I got a machine that is not typically a first macne so the assumption was that you could wind a bobbin, thread a machine, and generally get around a machine. They were just covering how to get around in the menu and choose a stitch. So, yay! Now I still don't know how to sew, it's just now I don't know how to sew with a threaded machine! Woohooo!

After running around the house like a mad man, Duncan ran up to me and said "Mom, I'm ten pounds fast!"

Ian tried finger painting. No bueno.


This one is more at home

getting dirty!


My skinny boy! No line backer, that's for sure. (That's someone who plays football right? Winkie!)


I was trying to get them together smiling but smiling on queue is not a stong point. But then Ian did this! Not typical.


Now this is more typical!


Pete and repeat. This was a rare quiet moment.

It's been a year!

It been a whole year since I posted! Really though, I know I am late. The hubs got a new PC for Christmas and has been trying to figure out the computer situation for four days. Four! I told him my fan is waiting and he didn't believe me. I had a post ready but couldn't publish it without pictures for fear of retribution. So here we are!

We are still singing lots of Christmas songs around here, mostly because that's what we had practiced for the school program. I am glad though, because now I have the opportunity to take note of the tiny four year old errors in the lyrics. "No what fun it is to ride in a one sof an sleigh!" Duncan's adorable. He is starting to tell stories and make attempts at jokes and we are having all kinds of fun with him.

If only he was slightly more gentle with Ian... And Ian was slightly more gentle with him! Ian's a hitter and Duncan knows it's wrong. So when exactly do you just give them boxing gloves? Soon I bet because I am almost at my limit of the whining!

Asher has been eating whatever the family eats for the last several weeks and he eats a TON. Really... Like I am the reason he is in the 8th percentile! We had chicken, cauliflower and rolls the other night and he thought he had gone to heaven. Left over chicken the next day with some diced canned apples and he ate and ate and ate! I love that he is feeding himself but he is really hard to keep up with. His percentage of what actually goes in his mouth rather than on his lap has gone up with every day which is nice too...

We took all the kid's to church last Sunday which we haven't done in ages (just family baptisms, blessings and stuff like that) and it was pretty fun! We walked in, Matthew had Dylan and Asher and I had all the bags and the two big boys. Wow. Crazy. They did pretty well actually. Matthew managed Dylan who, as usual, LOVED the music! She is in a funky sleep schedule and she fell asleep but toward the end there was a great pianist who played a long piece and she woke right up smiling and looking around.

Ian went to nursery and Duncan Primary (new class!) and Matthew attempted to take Dylan to go with Duncan. Asher and I went to Sunday school. Matthew is not all about Dylan and church and we aren't quite sure what to do about it. She doesn't fit into the class that is for her age and the only part of Primary she would like is the singing. (And Matt being in Duncan's class was more of a distraction. Otherwise she is going to want to be doing her own thing. Nursery is probably more appropriate. I know that everyone will bend over backwards trying to get her what she needs so everyone in the family can go to their own classes but we aren't sure what will work yet. They are even willing to call someone to just be with her for the two hours.

Matthew ended up taking Asher and Dylan home and I stayed, went to classes and got the big boys. This might be our norm with us alternating who stays and who goes home. 9:00 church is way better than 1:00 as we are usually at 75-100% sleeping in the afternoon where morning is more like 25-50%. Sunday Dylan napped in sacrament which was challenging, but doable.

I LOVED going and seeing all of my awesome neighbors though! I hadn't been in months and it wasn't awkward at all. Quite fun actually and I am looking forward to attending what I can of the Book of Mormon classes. Been too long!

I must say, it was nice to sign to Matt from the door of Sunday school. "You want to go home? You need key?" Rock on. Classes start again next week. (Good too, because we miss little Eden!)

I haven't made Ian's appointment for tubes yet, I am hesitant to do something I am not sure he needs but living at the doctor's office isn't my idea of a good time either. He has been talking more already, we are making him say everything. We even got our first two word sentence the other day (putting words together is where he is most behind). I walked out with Asher and he came running over, leaned in and said "HI BABY!!" It was adorable. Win!

Dylan has been having spasms again so I am getting in to the Spina Bifida clinic to be able to talk to Dr. Neuro again. They don't appear to be getting worse which I expect. Hopefully we can get in and do something before they are too distracting. I am interested to see what he is going to say about them. It's also time for new AFOs and we need a script for that so let's get in and kill those two birds.

(Stop reading now if poo issues make you queasy... this is our life, and poo is my Nemesis.) Our biggest issue with her right now is probably poo issues. She was way backed up again and when we got her un stopped she went to the bathroom for nearly 48 hours straight, then fairly frequently. Poor kid. I warned Shelley ahead of time before she went to school on Wednesday, I had changed her three times by that point! I don't think Wednesday was bad but Friday she had a small blow out. (Then came home and had a massive one!) Poor Shelley right? It's different when we love her but not everyone has the stomach for her issues!

Sweet Shelley too, even wrote me note to explain why her onsie was in a plastic bag but included how much she ate and hoe much fun she had singing and dancing to the music that day. Love that gal.

Dr. Ped said her dose of Senna was pretty high for how small she was but she is unique so he didn't really have a problem with it. BUT because it's either too fluid or she is stopped up I don't think that dose is working for us. I am going to lower the dose and play with adding a small dose of Miralax every day and then we will see how it goes. The goal would be to get her in a routine where she goes at the same time every day (senna) and it's soft enough for her to work through (Miralax). She couldn't handle "normal" toddler poo.

Been on the case for several days and still haven't gotten the right mix of meds. Good thing we have awesome diaper rash stuff, she gets red and we have stuff that clears her right up over night. It's beautiful... And special order.

Fortunately I am getting used to the signs and smells that lead to her being backed up so we can manage it. I am no pro, I wish I could tell earlier, but I try before she gets too sick.

Got to love the table talk right? On to pictures!

The big baby and the little baby.


I only got five shots before the memory stick was full on the camera! Boooo! Hiss! But this was the best one! (I am dying at how misfit they look, yet the boys have their shoes on meaning we may actually have left the house looking like this!)


Packing peanuts!! We had a minor packing peanut war the other night. Someone enjoyed himself don't you think?


So funny. We aren't even sure what he was doing...


And Duncan INSISTED I make brownies with him instead of doing it while they were in the bath. Uh huh... learned from his mama!


He thinks he's so big, not so happy about that!


And a stolen picture from a sister! Grandma made all the big boys new hats for Christmas this year. This was a great picture, right before Duncan started being CRAZY with his cousin Gannon. (Who loves him anyway.)