Monday, October 5, 2015

On the Imagined Dangers of Wearing Costumes. Every Single Day.

Over the years I’ve walked down sidewalks with princesses and super heroes.  I’ve gone grocery shopping with prima ballerinas and mermaids.  I’ve taken a ninja turtle, mermaid and butterfly to the zoo and on any given day my house may look like we’re getting ready to go trick or treating on Halloween when it's no where near October 31st. 

Maybe you’ve heard people say that you shouldn’t let your kids dress up all the time (if you read the same blogs I do, you may have even read the paragraph that inspired this).  Maybe someone has recently told you that if you let your kids dress up and wear tutus to the grocery store and princess dresses down the sidewalk they won’t respect your authority or learn to listen to you and they’ll grow up to be juvenile delinquents that don’t know how to dress. 

After reading that advice two days ago, somewhere in northern Oklahoma, and pondering it as we crossed over the state line into Kansas, and then Missouri and now all the way across Illinois, until now, we’re approaching Chicago, I couldn’t force myself to agree. 

You see there are many challenges that we face as parents. There are days and decisions that feel like battles, or at least long, slow uphill walks. And I won’t pretend that I have this whole parenting thing figured out or that I know all the answers (or even most of them).  But I do know my kids. 

And I can’t bring myself to believe that letting my kids dress up, and horror of horrors, leave the house dressed up, will damage them.  In fact as I watch their imaginations blossom and hear them playing together and as I hear healthcare professionals comment on Maggie’s amazing imagination and pretend play skills, I feel like giving them a certain amount of freedom when they're picking out outfits has been the right decision. 

That doesn’t mean that they have complete freedom. Lines sometimes have to be drawn.  I’ve heard myself say “We do not wear bathing suits Mass!” and on Sunday’s before we’re home from our parish the rules are somewhat stricter.   And Maggie and I have butted heads on many a day when she tried to convince me that bare arms and legs were appropriate attire when the temperature was in the negative numbers.  That just isn't going to happen.

But in general if a child has their heart set on wearing a princess dress or other costume out, and that outfit is clean and ready to be worn, I’m okay with it.  I marched in to a pediatric neurology appointment this week, with a pink sparkling mermaid beside me and the chiffon and sequined covered tail that she was wearing was the least of the challenges that we faced that day (as of today I should know that my #1 concern should be that the first referral to another specialist just came in and the wait list is over six months long!  But I digress...).

There will be time later to grow up and learn that certain outfits are appropriate in certain settings.  They’ll be grownups for the vast majority of their lives.  

Sadie, at seven, as already realized that there is a time and place for dress up.  She knows that sometimes we can dress up and sometimes it makes more sense to wear play clothes that are easier to get clean if they’re dirty, and sometimes we go places where dressing up in fancier clothes is appropriate.  The little kids will get there as well. 

There are other battles that I’m more invested in fighting.  “No you can’t squeeze down that heating vent, it would be a very bad idea.”  “Don’t even think about hanging from the curtain rod!  How did you even get up there?!?!  Can you scale walls now?”  “You need to be gentle with your brother.  He doesn’t like it when you pinch his cheeks!” are far more pressing issues.

I have to choose my battles and choose them well.  And I’d rather save those battles for those times every day when I have to insist we do something a certain way or for moments when there are simply things that must be done that certain small people seriously dislike, like the brushing of teeth and hair, or going to an appointment that just isn’t going to be fun. 

You see, they like wearing costumes, and I don’t see any harm in it, at all.  In fact I see benefits as I watch them pretend together and create costumes all on their own.  

Just because a child isn’t meeting a particular milestone right now (if you can call giving up wearing crazy, fun outfits a milestone...), doesn’t mean that pushing them towards it is the best possible decision.  Sometimes there’s really no harm in washing that much loved princess dress while she sleeps because you know that she’d be thrilled to wear it in the morning. 

Being "normal" is overrated when you’re four.  In fact, I’m not really sure that it exists.  But those years when they want to wear the same princess dress or super hero costume come to an end rather quickly, as they move on to different games and ways of playing and if they want to stretch their little imaginations until they fall asleep happily in layers upon layers of silky costumes, I’m okay with that. 

And I’m okay if they want to flounce about town in them too.  I’m already beginning to see more and more clearly that it won’t last forever, as strangers keep telling me whenever I leave the house with only James, and that maybe they don't have it wrong when they wistfully remind me that it goes by too fast.

So I’ll be letting them leave the house looking ridiculously cute for a little bit longer.  And I’ll smile the next time I hear the ridiculous notion that it will somehow cause them to grow up to be juvenile delinquents who don’t know that I’m serious when I say that we don’t wear that out of the house, or that they won’t know how to pick out clothes when they’re twenty, because I let them wear a tutu to Meijer when they were two. 

Somehow I think it will all be all right and maybe a little better than alright if we could all be a little more understanding of other perfectly valid parenting choices.  There’s enough to worry about as a mom without building up tulle and chiffon dragons that must be vanquished in our quest to do whatever is said to be best right-this-moment and a four year olds fashion choices shouldn’t be anywhere near the top of that list.  

Saturday, September 26, 2015

#StandforLife on Social Media this Tuesday

Have you heard that Planned Parenthood supporters are planning on flooding social media with #StandwithPP on the 29th of this month.  After hearing several people express interest in coming up with an alternative for anyone who wants to show that you don't support the abortion giant, I decided to come up with a few overlays along with a hashtag that I've seen being used recently that seemed like a good fit.  

An hour later I have these examples of possible profile pictures:

And here are the three overlays that I created to make them:

If you'd like to make your own overlay it's pretty easy and with PicMonkey you can create your own #StandforLife in just a few minutes.  

First save one of the plain pink #StandforLife pictures above (on my computer this is done by clicking on the image and then right clicking on the image once it comes up and selecting "Save Image."  After that on the PicMonkey website open the pink picture you've chosenin the "Edit" option that comes up when you open the PicMonkey website.  

It should come up in the window looking something like this:

Now find the Textures button on the left hand side of the screen:

At the top of the choices you will now have is a button that says "Your Own."  Click on that.

Now select "Open my texture."  This will bring up a list of your files and you can select your profile picture:

This should bring your picture up, overlayed with the pink picture.

Next I made sure the Blend Mode was set to Multiply, because that seemed to work best with the white letters and pink background:

That gave me this:

And after that you just have to save your profile picture and upload it to the social media sites of your choice.

And that is how you make a #StandforLife profile picture.  

Wednesday, September 23, 2015

Diary of an Anniversary

Late last night I thought I'd jot down a not so quick look at our day, for anyone who's like me, and enjoys reading these things (the pictures are not from today, since it was so busy I hardly snapped any):

6:05 am- "Mommy, me and Maggie are awake!" The words echo through the house.  I lay very still and glance at my watch.  It's time to start the day and any time after six is now considered "sleeping in."

6:10 am- I'm about to begin my early morning writing session when I remember that it's our anniversary and yell Happy Anniversary down the stairs to Paul.  I hear him call back that he knew I'd forget.  I'm not sure remembering before 7 am counts as forgetting.  My brain just isn't totally firing on all cylinders immediately upon waking, especially after nursing the baby at least six times during the night.

7:10 am- I should have started getting ready for the day five minutes ago, but I was so, so close to hitting 80,000 words in my story that I kept going.  I do a little dance (okay, in my head, it's still too early for actual dancing) and close the computer and then attempt to wash my hair and get ready in five minutes.

7:23 am- I wander downstairs with my computer, which now has a dead battery.  I leave it on the stairs and find my calendar, flipping it open to see if Patch has speech this morning.  My calendar informs me that Maggie has therapy at nine, Patch has his dairy challenge at 1:30 and Maggie has OT at 2.  The dairy challenge and OT session are a half hour drive apart.  Getting everyone where they need to be is going to be tricky.

8:00 am- I'm upstairs getting Maggie out of a bubble bath when I hear Sadie say that there was a knock at the door.  I call Paul and ask him to help Maggie get out of the tub and race downstairs to meet Patch's speech therapist while still in the yoga pants and t-shirt that I put on the paint the play room the night before, and lazily decided to wear to bed.  Apparently my initial thought that he had speech today was correct and I'd only written it down on the wrong spot.

8:04 am- The girls are settled in their room, and I've gotten Patch dressed.  He has therapy and I read over the evaluation done by his therapist and one of the special education teachers who evaluated him at playgroup last week. I read about how he played with blocks, puppets and said hi to another little boy, and the only real concern anyone has is that his words are still unclear about half the time when he speaks.   I sign the papers that I need to sign and double check the spot when I write in his next session.

8:40 am- I race upstairs and wake up Paul so that he can take Maggie to therapy.  He worked until around 1:30 and then came home and spackled a wall, but he gets up and takes her to her therapy session while I finish Patch's session.

9:03 am- Paul comes home and collapses into bed, while I start school with Sadie.

9:10 am- While Sadie makes a half dozen trips to the kitchen to ask me questions about what she's reading, I make pineapple strawberry spinach smoothies for Paul, Sadie and I.  Sadie and I drink ours and put Paul's in the refrigerator.  Then I settle in to help her with her school work.

9:13 am- James is starving.  It doesn't matter that he just ate an entire container of baby food, he's ready for his nap and that means nursing.  I multitask, helping Sadie and nursing him, until he falls asleep. During moments when Sadie doesn't need my help I read the Book of James in the Douay Rheims Bible on my Kindle.  Our pastor has challenged us to try to read more scripture, starting with James and I'm trying to make sure I make time in my day.

9:25 am- I sneak across the room and manage to successfully put James down on the floor and sneak back over to the dining room table so that I can help Sadie with her schoolwork when she needs help.

11:29 am- While Sadie works on some big subtraction problems I go upstairs and tell Paul that it's 11:30.  He doesn't believe me.  I show him my watch.  Then I explain that we have a lot to do and lay out the schedule for the day.

11:50am- Paul picks up Maggie from therapy while I quickly throw together lunch.  We won't have much time for eating once they get home.

12:10 pm- Paul and Maggie arrive home.  Maggie is clutching a small pink crown that someone brought and gave her for at therapy.  Paul explains that it's a "ballerina crown" and that she's been repeating the word ballerina since he's picked her up.

12:12 pm- Paul tells me that Maggie got away from her therapist while they were walking out of the office for the second time in a week and dashed into the parking lot (next to a giant busy road).  My heart feels like it's stopped.  I repeat "but her plan says there's supposed to be hands on her at all time" in my head at least fifty times.  I ask a dozen questions and none of the answers make me feel any better.

12:40 pm- We load all the kids into the car.  We drive to Burger King and pick up the very first milk shake that Patch will ever taste in his whole, entire life.  It's a moment he's been waiting for, for a very long time.  His allergy began to show up when he was around a month old (through nursing) and he has never in his life had anything with dairy products in it.  After passing his allergy skin prick test last week he has a dairy challenge today.  I'm really nervous about the idea of giving him the thing we've spent almost three years avoiding.  I'm also really excited for him.

1:00 pm- We stop by Paul's old work place so he can pick up his last paycheck.  We wait in the car while the manager complains that he doesn't work there anymore and is rather nasty about it.  I mentally write a post about what a horrible, horrible place to work this particular business was (10 management changes in 14 months, many walking off the job in the middle of a shift... because it was apparently that bad for the managers too) and give thanks that he got a job offer from one of those managers who left last month.  I barely manage, with all the self control in my entire body, not to write that particular rant and I try to make myself promise not to write it ever.

1:15 pm- We drop Paul and Patch off at the allergists office.  As we drive to the hospital for occupational therapy I realize that Maggie's session is supposed to be in the pool.  I take a side road that takes us away from the busy part of campus and manage to cut a few minutes off the time it takes us to get home.

1:29 pm- I park in front of the house, unload the kids, run down to the basement, find Maggie's bathing suit, get her dressed, make sure I have a change of clothes and a towel in her backpack and then load all the kids back into the car.  There's a very good chance we're going to be late.

1:59 pm- We make it to the office with less than thirty seconds to spare.  Maggie is thrilled that she gets to go in the pool.

3:00 pm- OT is over and I load everyone back into the car.  We take the back way again and drive back over to the allergists office.

3:20 pm- We make it to the allergists office in record time.  Paul brings out Patch and tells me that I need to call the allergist and give the nurse updates, first when we get home, then again in the morning.

3:27 pm- Patch says:  "Mommy.  Tummy hurts.  Tummy!  Tummy hurts!"  He tells me at least our times over the course of the coming hour.  He also tells me no one gave him his milk shake.  Paul explains that they took it and gave him tiny amounts in increasing sizes, so he never realized that he got to drink it, because he didn't get to have it out of the cup.

3:29pm- We drop of Paul's paycheck at the bank and then head over to Meijer to pick up a huge box of diapers.

4:34 pm- We've made it home.  We unload the car.  I go inside and realize that the Pope has arrived.  After a few tips from friends I find the Mass when it comes on and put it on the computer.

4:36 pm- Paul reminds me that we need to call the allergists office.  I tell the receptionist why I'm calling and she asks how he is.  I explain that he seems great, but has complained that his tummy hurts four times, although he's running around and playing.  She transfers me to the nurse, who isn't thrilled with the tummy ache news.  She relays it to the doctor and I'm instructed to call back tomorrow with another update.

4:48 pm-  Sadie comes over to the kitchen door.  I tell her the Pope is in the US.  She tells me she's really excited to meet him.  I freeze.  Do you remember the invitation from earlier this year that was basically an advertisement to buy something, but was placed in the form of an invitation to "meet the Pope?"  No?  Well Sadie does.  And she was certain that it was real.

4:49 pm- I deliver some disappointing news.

5:21 pm- Paul returns with burritos for our special anniversary dinner.  Sadie tells Patch that sometimes people in Michigan enjoy eating Mexican food, possibly because she notices him not eating his.  Patch, who is not a fan of 99% of foods, and refuses to touch his dinner 90% of the time, sips his almond milk.

5:55 pm- Maggie asks to go up to sleep.  Paul takes her upstairs and tucks her in bed.

6:04 pm- I start scrubbing one of the walls in the playroom to get it ready for primer and suddenly I have all the help I could possibly ask for.  Both Sadie and Patch are scrubbing alongside me and James is trying to open a container of wipes to join in the fun. The house is cleaned in record time.  I'm rather impressed.

6:30 pm- Paul takes a sleepy Patch up to bed.  I set James up with some toys (and his sister) in the living room and try to discreetly paint the wall around the corner in the playroom.  I'm halfway through when James comes over and repeatedly tries to steal the paint can from me.

7:32 pm- I finish adding a second coat of paint to one part of the room and a first coat to another.  I calculate that at the current rate I will be finished in exactly one week before the dark plum and peach paint in the play room (really the dining room) will be covered.  Even with just the primer painted on half of the room our downstairs already feels much brighter.

8:00 pm- Paul leaves for work.  He sneaks out the back door so that James doesn't see him leave and have a complete meltdown, the way he does when any person, family member or therapist, leaves the house without taking him outside to play.

8:01 pm- I take Sadie up to bed and try to get James, who's attacking the walls trying to find wet paint (thankfully I did the lower part while he was asleep, so he only manages to find one little section that was damp) to go to sleep.  He resists, rolling around the bed at high speeds while I keep him from falling off and laughing maniacally.

9:10 pm- James is asleep.  Finally.  I very quietly sneak downstairs and grab my computer and turn off the lights.

9:11 pm- I start writing this post.

10:15 pm- It's time to close the computer and drift off to sleep.

Tuesday, September 22, 2015

9 Years Ago Today

 Ten years ago today Paul and I went on our first date.

Nine years ago today we stood before God and our family and friends and vowed to spend our lives together.

As I write this, looking through pictures of the last decade, I can hardly believe how quickly the time has passed by.

Thank you so much Paul for the past ten years!  I pray that we'll be blessed with many more as we walk this road together, and I can't wait to see how it will continue to unfold.  The last decade has been a whirlwind and I'm so incredibly grateful that I've gotten to spend it with you!





Wednesday, September 16, 2015

On Gluten, Caffeine and Things that Still Surprise Me

I don't know how it's possible, but seeing things that I know demonstrated in a very clear way, still somehow comes as a surprise when it comes to Maggie's diet.  

One of the main ways that this has become clear to me over the past two years is with Maggie's reaction to gluten.  

In the beginning, when I realized that we were seeing major behavioral differences with her as a result of my elimination diet cooking while we were trying to figure out Patch's allergy, I didn't realize how big of a deal it was, or how minuscule amounts of wheat could cause huge reactions.  

And even after it happened the first time, when she had a tiny bit of wheat for the first time in months (one bite of breading on a tiny piece of fish) and was sick for two weeks, I wondered if it was a fluke.  
Then it happened again.  It was play dough the next time.  And the same thing happened.  

By the third inadvertent exposure a few months later, I could no longer really wonder if there was a relationship between the many physical and behavioral issues that erupted with a teeny tiny bit of gluten.  

Despite seeing the reactions in action multiple times, when it happens after three of six months of protecting her from getting into something that will make her sick, I'm still somehow shocked.

I suppose, after seeing how small things can have such an enormous effect, I shouldn't be surprise that a little bit of Coke is having an enormous impact on our lives.  

At least that seems like it's the reason behind the week we've been having.  

In the last week since the neurologist suggested we give Maggie a little bit of Coke each day we've seen some enormous changes.

The hugest is that she's incredibly calm.  She also hasn't been waking up at 3 am and jumping on the bed for 3 hours.  One day she even slept until 6:30.

It was amazing.

The calmness has not gone unnoticed.  Her speech therapist commented on how incredibly calm she was and how many words she was using.  Her OT said she'd never seen her appear so organized and engaged.  And her therapist today told me that she'd been incredibly calm and had the best day since she's worked with her (which is saying a lot since this child loves going to therapy and is in tears if we arrive early and she can't go straight in and start her day).

And the best part is that I've been playing with the Coke amounts and it seems like it only takes a very small amount to have an effect.  I started out giving her about five ounces a day, but she wouldn't finish the cup and the focus and calmness seem to last between 2-3 days.

I'm still playing with the amounts but it seems like somewhere between 3-5 ounces, every other day (and maybe even every third day, I'm going to try to push it back a bit more and see how it goes) results in a calm, less stressed kid, who's better able to do the things she wants to do and make the people around her understand what she's thinking.

I am leaning towards thinking that the Coke is effecting her hyperactivity more than it's effecting any headaches she might be having, but it will be interesting to talk to the neurologist in a couple weeks and see what he thinks.

Despite seeing how it's working out first hand, it's still really hard for me to believe that it's having this big of an effect on how our days go and how she's feeling.  I mean it's Coke.

I'm just glad that right now she seems to be feeling really quiet good and I hope it lasts!

And in somewhat related news (at least to the first part of the post), Patch went in for his yearly allergy retest and he tested negative for every, single allergen.  Next week he goes in for a dairy challenge in the allergist's office!

After not allowing him to have dairy for his entire life up until now I am a little nervous about the challenge, but I'm also super excited about the idea of him having outgrown his allergy!  I really hope the challenge goes smoothly and he can taste ice cream (from cow's milk) for the first time in his entire life!

Tuesday, September 15, 2015

On Toddler Bickering and Peace

I made it seven years as a mother with virtually no children fighting.  That time has ended now, but I'm still shocked that it lasted as long as it did.

I know, it's basically unbelievable.

I sometimes have thought that it's a perk of the specific challenges that our family has faced.  For whatever reasons, with Sadie's temperament and Mae's personality, they just didn't/don't fight.
Therapists and social workers have come to the house and commented on how odd it is.  I'd like to claim that it's something that I've done, but I know it's not.

It's not as though our house is either silent or peaceful.  My children are like a small herd of elephants trampling from one side of the house to the other.  Something breaks almost everyday.  Sometimes it's furniture.  "Can you brace that with a straight brace and an L-bracket" are words my husband frequently hears.  We just installed triple locks on the kitchen baby gate and it took Maggie less than 24 hours to figure them all out.  And I say "please don't jump on the couch" about fifty time a day.

But fighting just wasn't their thing.

And up until now there's this weird thing that has happened.  When Sadie was small and Maggie wanted a toy, Sadie would let Maggie have it.  Then Patch came along and when he was tiny and he was insisting that a toy was his, both girls would immediately hand the toy over.

I'd watch and think that this was truly too good to be true as each two year old suddenly stunned me by proving that they actually could share.

But it lasted for longer than I could have hoped.  Even our two year olds were ridiculously enchanted by every baby they come across.

Then James came along and has, of late, reached the stage where he's turned into a little tyrant.  He sees someone else playing with a toy, any toy, and he wants it.  He zooms across the room and grabs it from one of his older siblings hands.

And... they let him have it.  Even Patch joins in, while saying "Buddy!" with a little laugh.

But the fighting, which surely couldn't stay away for ever, has arrived in the form of Patch and Maggie and their daily battles.

Someone is always touching someone's arm.  One of them just pinched the other one.  Maggie wants the light in the playroom on and Patch wants to turn it off and on and off again.  Patch tripped and fell and is crying too loud.

He's no longer little enough that she thinks every sound he makes is adorable.

They don't fight all the time (unless we're in Mass... then it's just about all the time), but they definitely go through half hour stretched where they go around the house constantly annoying the daylights out of one another.  And as annoying as it can be, it also kind of amazes me because this has to be a developmental stage, doesn't it?  It feels like it is.

Still, Patch and Maggie are exceptionally close.  As Patch has hit language milestones, Maggie often follows just a step behind, beginning to use words and phrases just as Patch starts using them.  Developmentally she's following close behind him in many ways and sometimes I feel like this might be kind of what it's like to have two year old twins.

For all their fighting though, they're also rather inseparable.  When Maggie goes to therapy Patch frets about where she is.

And then there he and I had this conversation as I was getting the kids ready for Mass this past Sunday.

Patch: "So cute!"
Me:  "Who's so cute Patchy?"
Patch:  "So cute!  Maggie!  So cute!"
Me:  "She is cute, isn't she?"
Patch:  "Yeah.  Tummy!  Tummy hurt!"
Me:  "Does your tummy hurt?"
Patch: "Maggie!  Maggie tummy hurt!  Maggie tummy!  Tummy hurt!"

I glanced over at Maggie who was playing happily. She appeared to be perfectly fine.

Patch had been sick earlier in the week, but everyone had been healthy for at least three days.
I didn't think too much of it until I came out of the store from running in to pick up a few things a few hours later and Paul told me that Maggie had in fact gotten sick.  Patch had been right.  There'd been no obvious signs that I could see while I spent the morning with her, but he had seen something that I didn't.

I guess I have to put a little more stock in Patch's Maggie observations.  For all their arguing they are exceptionally close and he seems to have some extra insight on what's going on with her, that even I don't see.

Saturday, September 12, 2015

Reasons the Ten Month Old Doesn't Want to Sleep

Over the years I've heard lots of people talk about those first newborn months as the hardest to survive when a new baby arrives.  With Sadie, our colicky high needs baby, this was absolutely the case (actually the whole first 18 months of not sleeping more than an hour or two at a time are a blur).

Our last three babies have been incredibly easy newborns, who spent most of their time swaddled or being worn, sleeping.  But there is an age that arrives where I've come to dread the nights (in a much smaller way than what moms with colicky newborn experience) and it usually arrive around ten months.  

At ten months old Patch, Maggie, and James all seemed to realize that the world continued after they went to bed and they absolutely did not want to miss a moment of it.  James has reached that stage this week.  And as I tried to convince him to go to sleep last night I began to write this post in my head, trying to store away all the reasons that he would not even try to close his sweet little eyes.  

I should probably add that when he first refuses to sleep I would try to bring him downstairs and play with him, and he would scream to be picked up.  He didn't want to sit on my lap.  He absolutely didn't want me to eat my own dinner (I'd fed the kids while Paul was getting out the door to work and had made the mistake of thinking I'd eat after they went to bed).  Or brush my teeth.  Or let me pick up a book while I've heard him and do the last night of prayers preparing for our upcoming consecration to Jesus through Mary.  He didn't want me to do anything.  He didn't want to do anything.  But most of all, he didn't want to sleep.

And now here is an abridged list of all the reasons that James does not want to go to sleep (with an attempt at remembering them in chronological order).  Beginning while I tried to convince him to go to sleep in my arms, after realizing that putting him down, and even laying next to him and playing with him on his blanket was just not happening.

He wants to see the cat first.
He wants to grab the cat.  
He wants to yank on the cat's tail.  
In case you're worried, Kittyfish is incredibly smart and doesn't come anywhere near our younger three while they are awake.  No cats were harmed in the writing of this post.
He wants to scream (happily) while he watched our cat watch the cat across the street from our front window.
He wants to pick up a spoon I was trying to eat dinner with, off of the table.
He wants to eat my dinner (after eating his own and Patch's.  Notably he does not want a snack when I offer it).  
He wants to bang the spoon against my bowl.  While I try to eat.
He wants to get down off of my lap.  
He wants me to pick him up.  

After going upstairs...

He wants to find the idiot cat who's followed us upstairs and is meowing in the room with us.
He wants to grab the cat.
He wants to eat my watch.
He wants me to take the watch off so he can find the two lights he knows that are on the back that measure my pulse.
He wants to eat my phone.
He wants to stick his fingers in the fan.
He wants to pull the fan out of the window.
He wants me to turn the fan back on.  
He doesn't want the blanket touching his legs.
He's cold because the fan is back on and the blanket isn't touching his legs.
He wants me to hold him up over my head while I lay on my back and tell him he's an airplane.
He wants me to hold him up over my head while I lay on my back and tell him he's an airplane.
He wants me to hold him up over my head while I lay on my back and tell him he's an airplane.
He needs to find where I plugged in my phone.  
He's trying to squeeze himself down between the wall and the bed.  
He wants to put his fingers into the fan (and while the fan is off we discover that that is actually impossible with this fan.  Thankfully.).
He wants to nurse.
He doesn't want to nurse.
He absolutely does not want to nurse.
He's thirsty and decides he needs to nurse.
He's not getting much milk because he spent the previous hour before he started fussing, nursing (and he had been burped, so it wasn't that).
He's changed his mind and wants to find the cat again.  
He needs to look out the two inches of window space between the fan and the curtain.  
He wants to know why I won't pick him up and pretend he's an airplane.  
He's too tired to sleep.  

Oh but he can sleep in the stroller.  While we walk past traffic and go over extremely rough sidewalks.
And finally after two hours of trying to get him to sleep he and I fell asleep, only to be woken when a certain two year old who's had a high fever for two days woke up and needed Mommy... approximately half an hour after getting James to sleep.  

Thankfully, I was able to get everyone to sleep again in less than ten minutes.  

Now if I could only remember how long this phase of not wanting to sleep lasts... It's a sweet time, but it sure is exhausting!  

Thursday, September 10, 2015

A Neurology Appointment and a Diagnosis

This morning Maggie and I had to be over at the University by 7:30 and so we were driving across campus as the sun was coming up, blinding us with its bright orange light as we made our way east.

One of her therapists met us in front of the neurology building and after completing a huge amount of paper work that I never would have managed without her help (which is to say, with Maggie on my own), we sat down to wait, while Maggie told us the names of different types of fruit and pretended to feed them to her doll.

We were called back and spent about forty five minutes giving two residents a complete rundown of her medical history.  I brought up anything that might possibly be relevant, and the phrase "I don't know if this has anything to do with it but..." must have come out of my mouth a half dozen times.

We talked about how her pupils are different sizes sometimes, and that more and more often this seems to be connected to her meltdowns.  We talked about how sometimes her pupils are giant and don't react to light at all.  And we talked about that one time, when they were enormous, and she came up to me with a blanket over her head, and I asked her if her head hurt and she fell down on the floor sobbing.

At some point I told them that a little over a year ago she'd started pointing at lights and saying "no rainbow, no rainbow" in the most surprised of voices, so I suspected that sometimes she saw rainbows around lights and how she's only recently been willing to look directly at any sort of screen instead of always viewing them from the side.

I explained how sometimes, lately, this most coordinated child of mine has been exceptionally clumsy, and how my champion sleeper, who needs 12 hours every night, is suddenly exhausted and now sleeping.

After we went over everything and he examined her, he announced a diagnosis, and it was a very, very long name that I instantly forgot.

But it basically means that he thinks she's having lots of migraines, and her pupils are different sizes during them, and that the effects of those migraines, the auras (the "rainbows") are there even when she isn't actively having a headache.

Around this time I realized that it was around a year ago that I'd stopped giving her magnesium (which she'd been taking to help with her gut issues, which seriously improved around that time) and I also mentioned the fact that she seems to feel much, much better on those rare occasions when I let her have a little glass of Coke as a treat.

It's the only caffeinated drink I've been able to convince her to take and after more discussion and questions about his effects he suggested I let her have a small glass each morning, since it seems to have a major calming effect on her and she seems to feel much, much better after having it.  And he suggested I start giving her the magnesium like I was before, while waiting to get in to see the regular neurologist who she'll be seeing to help manage the migraines.

It was kind of funny because while I could clearly see that drinking Coke helps her I was still hesitant to give it to her regularly because, well, it's Coke.  But after answering a series of questions I had to admit that she doesn't seem to have any negative side effects when she has it and it seems to make her feel significantly better and calmer, so it likely is a good tool to use in small amounts while we figure out what's going to help these headaches go away.

This is good news, because we have an idea of what's going on that answers all the concerns I had and we can help her now.  But it also makes me feel kind of terrible because it seems like it's likely she's been in pain for quite a while now, and I had no idea what was going on.  The more frequent meltdowns all summer were likely migraines and she had no words to communicate how she was feeling to us.

I keep remembering the day a few weeks ago when both her pupils were totally dilated and she came over to me with a blanket over her head and I asked her if she had a headache and she burst into tears and I had the sudden feeling that it was because I understood her and she was relieved.  It breaks my heart that it took so long to understand what was going on, but it's such a relief too, because hopefully we can get these under control now.

Thank you to everyone for the prayers and answers to the questions I've asked and suggestions!  We'll be going back in two and a half weeks to see the other pediatric neurologist and hopefully begin to get this out of control.

The First Day of School

This week we got back into the swing of things by restarting our school year.  Our years have usually gone from April to April, not because I planned it that way but because that's when we finished our first year of school, and Sadie begged to go straight in to the next year (and since Maggie was having therapy in the other room, keeping things organized and scheduled made a lot of sense).

So we actually started second grade back in April and did a couple months of school, and then took our first three month break ever, since it was basically impossible to take a break when I needed to keep the kids away from where Mae was having her therapy sessions, but going back to California gave us the chance to have an actual summer.

And after a lovely summer of not having any schedule we decided to start back up now that September had arrived.

After a lot of debating how to handle this year we decided to have Maggie go to the therapy center, instead of doing in home therapy, because it was nearly impossible to have her sessions without locking Patch, who very much wanted to be part of them, upstairs, which wasn't fair at all to him now that he'd given up taking naps.  So she's going to the center from 9-12, which she adores, while I do school at home with the other kids in the morning.

And since Maggie is super social that gives her a chance to play with her friends while she's at the center (and for me to get messages home like "Maggie kissed {fill in the name of an adorable little boy I see at drop off} today.").

The first day of school got off to a start when we loaded everyone into the car to take Maggie to her session.  She was the only one who needed to take her backpack, but Patch and Sadie both grabbed theirs as well, since it was after all, the first day of school.

We did decide to try out uniforms this year.  I'd bought them when they were super inexpensive a year ago, but hadn't ended up using them.  They were a big hit with the three bigger kids.

As I dropped Maggie off at the center she gave me multiple hard kisses to let me know that I could leave, right that second, but she did pause and say "cheese" and allowed me to snap one picture before attempting to break down the door to go find her therapist.

After that we took the other kids over to a local science museum.  The local schools all started up on the eighth, so I figured that it was the best possible day to go to one of the usually super busy educational spots in our city, because who was going to be on a field trip on the first day of school?

Sadie checked out the dental exhibit, which has been up for a few months already and is one of her favorites, while the boys went with Daddy to play in the playroom.

Then she did some castle building in the building area:

After that the boys came out to join us in the bubble area.

And James even said "bubble!"

It was almost time to go when we went into the light room:

All of the kids love this board.  When you twist the pegs they change colors:

Of course James wanted to eat the pegs.

And Patch yelled "Brother!  Brother!" when he found anything interesting, because he just had to show it to James.  Especially the plasma ball.

Then it was time to go and Patch made a break for it and I chased after him and followed him to the bird watching station.

He said goodbye to the fish...

And we went to pick up Maggie:

In a truly shocking move this is the first time in her entire life...

...that she voluntarily went around a puddle.

Sadie did ask to do more schoolwork when we got home, so we sat down and did reading and writing and math and all that stuff when we were back at the house too.

And she remembered that I asked to take a picture with her holding the chalkboard and insisted we go outside and take a picture in front of this particular spot:

And I totally edited in the words, since my handwriting with our giant
chalk pieces is horrible.
I did kindergarten with Maggie after she woke up from a surprising nap, and realized that as long as I can make every lesson we undertake have something to do with mermaid, she'll enthusiastically take part in it.

And of course I have to throw in a few pictures of James having our first day of school dinner.

All in all it was a great day!

Although it was definitely a little long, since a certain someone woke up before 5 am and stayed up long after bedtime...


Now to take Maggie to see the pediatric neuro-ophthalmologist this morning (arrival time 7:30am)!  Thankfully her BCBA is going to meet us there to help me convince her to cooperate, and hopefully the appointment is absolutely uneventful!