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!

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.

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!  

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!

Maggie's Perfect Dress

We'd marched, with all three kids, through JCPenny's and Younkers, searching for dresses yesterday afternoon.  I had yet to see a single 6X dress, the size that Maggie wears, in either store and moral was running low.
 
Sadie and I both had dresses now, tucked under my arm as I attempted to maneuver Maggie through the mall, her long legs slipping past the foot rest on the bottom of the umbrella stroller, so that every few minutes I would stop and ask her to lift them back up and she would, most of the time, for approximately five seconds before we repeated the entire scenario again.

When Paul suggested we stop at TJ Maxx I was skeptical.  I mean, TJ Maxx and Ross are both stores that we've frequented many times over the years, but I was ready to be out of the mall and didn't think they would have any of the sparkly party dresses that I was searching for, for the girls to wear to my sister's upcoming wedding.

Still I shrugged and followed him into the store, and while he took the double umbrella stroller over towards the men's section I wove back and forth between racks until we were in the girl's section at the very back of the store.

There wasn't a single puffy dress.  There were a few tight, thick knit dresses, but nothing that I knew I'd be able to convince Maggie to wear.

Turning I walked back towards men's clothes to tell Paul that there wasn't a single party dress in the store and that's when I saw them.

This past winter I had stumbled from store to store through a different mall, looking for a Christmas dress for Maggie.  We had found it, in a section of Younkers thick with Frozen inspired dresses.  She'd grabbed the dress, momentarily distracted from her interest in the shining white floor, her face lighting up.

It was the first time she'd ever expressed interest in any sort of clothing in a store and so we bought it immediately.

I still wasn't sure if she'd actually wear it, since she seldom wants to wear anything that isn't pink, and red is usually her second choice, but a few days later I held it out for her and she put it on and after that I would have to sneak the dress away to wash it, until finally it was in tatters after months of being worn every single time it was clean.

Then she lost interest.  Maggie's very particular about her dresses and once they cross a certain point of raggedy-ness she (thankfully) abandons them.

I'd joked with my mom a few months ago that I wish I'd known how much she would love it, because I would have bought at least three.

And there they were, in an aisle in TJ Maxx, marked down to $25.  There was one 6x and one 7/8 and I grabbed them both and held them up, victorious, as I caught Paul's eye.

They're hidden away now until the wedding, which is less than a month away, when I'll break out the like new dress to surprise her.

I can hardly wait to see her little face when she sees her favorite dress like new again!

Shopping on Etsy: The First Thing to Do if You Have a Problem

Over the last five years I've done quite a bit of business on Etsy.  I've both bought and sold there, mostly sold of course, everything from baby quilts to rosaries to headcoverings.

My most popular item has been my snood patterns. 

It's a lengthy PDF, that gives exact directions on how to make one of my snoods.  The pattern doesn't need to be printed because my snood pattern is entirely rectangular.  You can cut the dimensions directly with a ruler or cutting board. 

The pattern and tutorial give point by point pictures and descriptions of everything I do to make one of my snoods.  In the description it clearly states that your given the dimensions and instructions to make your own snood. 

Over the years I've sold many, many patterns and up until today I've never had a complaint about a pattern.  I've had questions.  I've helped people. 

I have had people who haven't been happy with snoods.  Maybe it didn't fit or wasn't what they expected, but every time it's happened I've offered a full refund immediately. 

Today I got an email, from another Catholic head covering shop owner, accusing me of being a scam artist.  She'd expected a printable pattern, which isn't necessary with my snoods. She said that what she was getting wasn't worth the $8 I'd charged for it.

I didn't write back and tell her about the hours of work I'd poured into each pattern to ensure that those who buy it are able to create beautiful snoods in whatever color they choose, and that it's quite insulting to tell someone their work isn't worth anything.

Instead I immediately issued a refund.  And I asked her in the future to give any shop owners on Etsy the benefit of the doubt before she calls them scam artists, because most really, really want to make things right when a customer is unhappy. 

After I issued the refund I saw that she'd already left me a one star review.  So I contacted her and pointed out that the wording does make clear what the pattern is, and asked her to take it down. 

She said she was doing future buyers a favor and refused. 

The oddest part was realizing that she's a fellow Catholic mom, in a number of groups with me on Facebook.  We have friends in common.

This won't hurt my business badly.  I have years of solid reviews.  It was bound to happen, that someone would come along who didn't read a description and then wouldn't accept a full refund when they explained that they were unhappy (all right, maybe it wasn't inevitable, but I have learned that you can't make everyone happy). 

But there is a point to this post. 

Please, when you're on Etsy, give the shops your buying from a chance to make things right if you aren't happy.  I gave the woman in question a refund.  I even added additional wording on every single pattern description to make it even clearer what the buyer is getting since she was so concerned that others would be deceived about what they were getting (roughly twenty pages of pictures, measurements and detailed descriptions from every angle that will hopefully solve every problem). 

Most Etsy shop owners want to make things right and keep their customers happy.  That's how businesses grow.  So please, if you have a problem, send a message.  Try to remember there's a person on the other side of computer and don't start out by calling them names or being mean or telling them the product they've poured hours into is worthless and could be found on Youtube in five minutes.

They'll appreciate that you came to them first.  And they'll likely do whatever they can to fix whatever problem you're having so that you'll absolutely love the product that you've purchased from them.

Ultimately, since I began writing this, the person did change their review, after saying some rather nasty words about what sort of person I apparently am for asking them to make it clear that I refunded their money since they were unhappy. 

Being the Squeaky Wheel and a Referral to a Neuro-Ophthalmologist

I've been in the midst of attempting to hammer out Maggie's schedule for the last five weeks.  I thought it would be easy when we came back from being gone for two months, because we'd already done it once and I thought that everything would fall into place.

After all, we'd been doing this for almost two years.

It hasn't been the case at all and I've been trying to balance being patient with making sure that referrals have gone through and that insurance companies are on track for approving therapies, since I've been told that this time of year they're reluctant to approve anything no matter how desperately it's needed.

A while back I met a woman at one of Sadie's activities.  She was very loud and extroverted, and her manner held a certain bravado that was immediately off putting to this introvert.

We ended up talking though, while the kids were off together and Maggie came up, and suddenly her manner changed entirely.  Her son, who's accomplishments she'd proudly been telling the group about, is autistic.

She went on to tell me that she used to be quiet and shy, but that years of advocating for her son had changed her and had made her into a different person.

In a way I understood already.

But in this last month and especially in these last few days, those words have come back to me again and again.

I spent a lot of the time on the phone with and in doctor's offices.  I try to always be super nice, even when I'm not getting great news.  But I've also learned that I have to be persistent.  Especially when I'm being told different things by different people in the same office.

The squeaky wheel gets the grease, and I don't really want to be that squeaky wheel, but I also know that I am Maggie's number one advocate and that no one else is going to do it for me.

Which brings us to this past week.

I've been worried about Maggie.  I can't even remember if I have written about this, but we went to the doctor's office back in April, they made room for us to come in immediately, because while she was at therapy her eyes did a thing where one was totally dilated and the other was a tiny pinprick and two of her therapists saw it and were concerned.

We saw the doctor and she said that if it happened again to bring her right in and they would order an MRI, but to wait and watch for now.

When we were California for the summer it started happening repeatedly, often when Maggie was having meltdowns.  When we got home I noticed that there were times when she was calm, in a bright room, and her pupils would both totally dilate and she would get a blanket and put it over her head and lay down in a corner and I would know that she must be in pain, and couldn't tell me. Even at OT evaluation the OT noticed that, in the bright play room, her eyes weren't responding to the light and were completely dilated.

I took her back to the doctor, asking for the doctor we saw that first day, who was so incredibly good with Maggie, and after finding out she wasn't in the office very often we went to see her regular pediatrician.

Maggie's regular doctor told me that she wasn't worried, and she would send us to an optometrist  (we just went this spring), but I was skeptical that an optometrist would even be able to get a look in Maggie's eyes, since optometry appointments have had limited success in that area in the past.  It's not like optometrists sedate their patients and it's not like she can clearly tell one what letter is on the board when she's panicked about being in a doctor's office (which is pretty much her reaction to 90% of doctors).

That appointment was a month ago, and since then I'd heard nothing from either office.

It is, however, probably why I was so shocked when James immediately got the neurology referral that I was so desperate to get for Maggie.  I barely kept myself from saying "so dragging his leg gets him sent straight to neurology but pupils of two different sizes for months on end don't?!?!!"

This week, after talking with Maggie's social worker, I began to formulate a new plan.  I found out that the first doctor that just happened to be on call that day when we went in, is actually a well known autism expert, who's on the governor's autism council, and that that's why she's hard to get in to see.  It explained why she was so fantastic with Maggie, and I figured it was the one chance I had at anyone getting a good look at her.

And a small part of me remembered how, when we first began to realize Patch had allergies, none of the doctors we saw believed me initially because he was "too little" at two months old, but they finally sent him to an allergist after realizing I would be back after every single scary episode, and that it was better to just write the referral, while letting me know they didn't think we needed it, than have me calling to bring him in every time his face swelled up to a frightening size (for those who haven't been around that long, we did need that referral, because he was in fact a two month old with allergies as our first meeting with his allergist immediately confirmed).

If I couldn't get anyone to take me seriously maybe I could squeaky wheel my way into some answers.  Or if I was really lucky, maybe I could get in to see the right doctor.

So I called the university's main pediatrics office and explained that my daughter is autistic and terrified of doctors and that this doctor had been amazing with her and the receptionist told me the next date that she would be working and to call at 8 am on the dot to get in to see her on that day since they couldn't book any more appointments ahead of time.

I called at 8 on the dot yesterday.  By the time I made it through the phone tree I was put on hold.  Someone else had made it through faster.  All the appointments were gone.  The receptionist offered to transfer me to the other clinic, where she was working after hours, to see if they could get her in last night.

I called and got a 4:15 appointment.  And this time I asked that we immediately be put in a room since for some reason exam rooms are okay, but that particular waiting room is terrifying to Maggie (it is very, very busy as the waiting room for four offices).

The doctor came in to see Maggie.  I explained that there were some things going on, and that they could be entirely unrelated, but that I was concerned.  Besides her eyes being frequently different sizes, or dilated altogether, she's suddenly stopped sleeping (she was my champion 12-15 hour sleeper until a few months ago) and is exhausted much of the time.

And she's clumsier.  She fell down three times at therapy on a single day and came home with a scraped elbow and a little cut across her nose.  If this were any of my other children I wouldn't be worried at all but Maggie is by far the most coordinated person that lives in this house (she may be the most coordinated person that I've ever met) and so it worries me.

Sometimes, with some doctors, I've gotten the impression that it can be hard to see past Maggie's autism to see if something else is going on that needs to be addressed.  I felt like that was what was happening last month.  So it was a huge relief when the doctor immediately said. "I think she needs to be seen by a neurologist, immediately.  Don't you?"

When she opened Maggie's file she found a referral placed for a neuro-ophthalmology appointment that had gone through this week and I explained that I had no idea how that was possible.  Reading back she found that the optometrist had refused to see her and had said she needed to be seen by a neurologist with the symptoms she's showing.  But it had taken a month for all that to happen and in that time I'd heard nothing and so we'd ended up back in the office.

The doctor we saw yesterday wrote up a second referral, this one marked urgent and sent it through last night.  She hugged me and assured me that I should hear from them soon.  So now we wait.

And hopefully I'll be hearing from them soon and that we'll get to the bottom of whatever is going on with her eyes.

The Not So Grumpy Baby

As the months go by James' personality becomes more and more apparent. 

For a long time, when he was tiny, and then when he was not quite as tiny, I joked that he was a grumpy baby, because his face upon seeing something he's interested in almost always becomes quite serious, and he ends up looking kind of grumpy.

The truth is that despite the "Grumpy Baby" pictures, he's a baby with a cheerful and incredibly laid back personality.

To capture a frown picture I have to catch him looking at something before he spots me, because the second we make eye contact the only picture I'm going to get will look like this:

Did I mention that Paul cut his hair?  Here's his new "big boy" haircut.

Still, even at ten months, James' personality is already shining through.

He can't crawl yet, but he's mastered pulling himself around the room with his arms, and he zooms from place to place.  Earlier this week Patch was sitting in front of one of James' favorite toys and I watched as James made his way over to his brother.
 
When he got to where Patch was sitting he screamed and waited for Patch to move.  Patch, of course, didn't even notice that he was there behind him, addressing his big brother with his angry baby talk and Patch went on playing with a couple of toy cars.  James belly crawled over a little closer and actually bit his brother on the side.

Thankfully James has all of four teeth (and the last two just came in, so I think he only had two when he bit Patch) and Patch glanced over and kept playing, still not quite getting how serious "Buddy" was about taking his spot, while I attempted to distract him with a different toy (and realized that James absolutely will not be distracted).

James' other interest has been climbing.  He can't stand on his own, but he has mastered pulling himself up onto things, like the trampoline, while I turn, completely shocked and realize what he's done.  Maggie must be giving him lesson when I'm not looking (and to be honest Maggie and James are pretty much inseparable since he is very obviously her favorite person in the whole, entire world).

He hasn't quite outgrown his floppiness though, especially in his lower body.

Today we went to his nine month well baby check (he's 10 1/2 months).  I'd filled out the ASQ beforehand and knew that we were still way behind on gross motor since he could only do 1 of the 6 things on the 9 month questionnaire.

We left with a referral to a neurologist, because of the hypotonia, hyper flexibility and especially because he's still dragging his right leg around and not using it.

The doctor was optimistic that he'll catch up with the help of PT, and so am I, but they have to eliminate other possibilities to make sure nothing else is going on, and so now we wait for the call for an appointment with the neurologist.

Now to get a little sleep before he wakes up and tries to convince me that it's already morning!