MRI Results and the Little Bright Spot

We have MRI results and they are good! Not perfect but definitely the best of the options since we already knew that there was a bright spot on her brain last year, we just didn't know what the bright spot was.

This week Tessie's doctor called to talk about a question I had and just as he called the results from her MRI came in and so we got to talk about those too.

And I get to share those with you, along with the explanations that I was given about how her doctor's think that little bright spot got there and what they think that it is.

Tessie's 2nd MRI

This day was tough.

It was really a day that just had to be muscled through minute by minute and hour by hour and when it was bedtime I was ready to hide under the covers and be thankful that somehow we got everything that needed to be done, done.

Sunday Updates: Week 2

So a few nights ago I was laying on the top bunk with Maggie, part of our nightly bed time ritual, when I saw her flip onto a screen on her iPad that I hadn't seen her use before.

Now usually during Mommy and Maggie time iPads are not allowed. But once in a while I bring a book to read and I let her have her iPad and we have quiet time together. Except quiet time only lasts for thirty seconds or so, because she decides that she would rather have my attention than play on her iPad and so she quickly begins to have me tell her a story that almost always goes something like this:

Maggie: "Molly. Freckle. Toe."
Me: "Molly is a mermaid with a freckle on her toe."
Maggie: "Flip, flip, flip."
Me: "And she goes flip, flip, flip."
Maggie: "under the sea."
Me: "Under the Sea."

Molly always has a freckle on her toe because Maggie has a freckle on her toe. Sometimes she also has legs. But she's always still a mermaid.

But on this particular night the iPad held her attention for a few seconds longer as she brought up the messenger screen and for a moment I saw a long string of a conversation filled with gifs.

I quickly grabbed the iPad. She grabbed it back and flipped to another screen. I grabbed it again. She grabbed it back a second time.

"Who are you talking to?

"No thank you please. NO! THANK! YOU! PLEAE!" Came the response, standard whenever she doesn't want to talk about something or is embarrassed.

I was surprised. I have extreme parental controls on both the girls iPads. Maggie has hers for short amounts of time, and not every day. She has apps that I've selected for her, but can't go on safari. And I hadn't taken the Messaging app off because I didn't think she had access to any phone numbers. I had looked at the app and it was entirely blank. In fact after I found the messages I tried typing in letters and I couldn't make a single name come up.

I still have no idea how she did what she did.

Somehow she used the Apple Messaging to access my phone book.

Because she's apparently a genius in breaking open more than just physical locks.

Now remember this is a child who, according to what we "know" doesn't demonstrate any significant ability to read beyond simple basic words.

I've had my suspicions, here and there, when we're walking along and she'll see the word mermaid, no picture, and her head whips around so fast and she runs over to get a closer look (even if it's in fancy hand lettered cursive) but even then I wasn't sure she hadn't memorized that single word.

So.

I opened the app and found that she had been messaging a therapist that she hadn't seen in almost a year, sending gifs and what I first thought was random letters, since December.

And I laughed and laughed and wondered if the therapist thought that they'd been coming from me and that I'd lost my mind.

There were angry Donald Ducks and other random gifs that had caught Maggie's eye.

I texted back quickly, that apparently Maggie had figured out how to text from her iPad and she texted that she thought that was what had happened.

The funniest part though is that she is one of Tessie's new therapists.

And she had therapy with Tessie on Thursday.

And we were able to laugh together. And she gave me more information.

"Were you able to read the messages?" She asked.

"I saw the gifs." I said. But honestly I'd been so embarrassed, thinking that it looked like they came from my account, that my first instinct had been to quickly delete it (something I regret hugely now).

"No, but did you read them? She was sending me sentences!"

And that's when I found out that Maggie had been texting entire sentences about her day to her old therapist.

And I nearly fell over.  And we laughed more about the amazingness of this kid and all that's going on in her head.

Yesterday her teacher called, to tell me the Special Olympics was canceled for the day, probably because of the non-stop rain, and I passed on the information to her and she said that they would definitely start her on a typing program on the iPads at school and see how it worked out.

And I think I'll sending Maggie texts from my phone and see what we can come up with.

This kid.  She is constantly amazing me.

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In surgery news: I had my surgery yesterday. I don't really know anything beyond that it happened because Paul was with the kids and picked me up outside the door, so he wasn't there to talk to my doctor afterwards and when I was awake enough to ask if my doctor was around to let me know how it had gone he was already in his next surgery.  

I'm still feeling pretty beat up this morning with my Motrin, but that's to be expected, and I'm sure I'll be feeling better everyday.

I'm having a hard time slowing down and not being up getting stuff done though.

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We let Tessie stay up late on Sunday night watching Goldie and Bear and woke her up early Monday morning.

We needed her to be exhausted by the time she got to her EEG Monday afternoon. And she was. 

She was also furious. The moment she realized she was being hooked up she was outraged. For a solid two minutes. 

The techs were ready to give up after one minute, and said not to worry. We could come back and sedate her.  

I explained that she because of the central apnea they would have to intubate her. So they rallied and tried one more time.

And after two minutes she was sitting back in my lap watching cartoons. By the time they finished she was almost asleep in my lap. 

And five minutes after it was over she was soundly asleep and she slept for just past the time that they needed her too and we had a little trouble getting our very determined sleepy baby to wake up because she wanted a three hour nap. 

But wake she finally did.

Two days later he neurologist called to check in and when he called and heard she'd had the EEG he checked and called back and let us know that it was perfect. 

So that is one thing checked off the list and now we just have to get through the MRI.

The MRI is where all my worries lie. The last one had the little brain bleed and was inconclusive. So it would be great if this one was not inconclusive and was actually... good.  Or better yet. Entirely normal.

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May has been the most hectic of months. 

I'm ready for it to be over.  I'm ready for school to be out and for summer to be here.  I'm ready for days playing in the back yard and going to parks and for long walks in the evenings.

I cannot wait.

We just have to get through my two scopes and Tessie's MRI and we're in the clear.

I have never been so ready for summer.

Sadie dancing around outside the night before her birthday.
Two summers ago.

The EEG Results, the Pre-Op Appointment, and a Missing Tooth

We got not one but two calls from Tessie's neurologist yesterday. The first on was checking in. But when he heard that her EEG had been done he tracked down the results and called us back to give us the news!

And Maggie lost a front tooth. I think it was loose for all of a day but she's not one to let something that can wiggle hang around for long.

Tessie's EEG

I'm just over here hoping that I never ever have to write that I'm taking a kid to get another EEG ever again.

That's pretty much my goal for the rest of my life. Sound good?

I think it does.

Tessie's Neurology Appointment

Because we hadn't had a big doctor's appointment in April and so we were overdue!

James goes to a Neurology Appointment

He doesn't have as many appointments as he used to, but once and a while James still heads to neurology for a checkup.

Okay, to be totally honest I was really hoping that they were going to discharge him today and say to come back if we needed to. But I also knew, because of the new breathing things going on with his sleep, and some weird eye things, that might not happen.

So instead he ended up with two new doctors.

Not quite a win.  But he did have a lot of fun dancing his way around the office being silly.

So maybe a win anyways?

The CD of the MRI

While we were in the hospital the doctors really wanted to be able to see Tessie's brain stem.  That region of the brain controls breathing and since no breathing was the biggest problem that she was facing, making sure that part of her brain was normal was a big deal.  

Thankfully she had recently had an MRI, without sedation,on our trip to Missouri.  

I called and spoke with the contact person for the study and she explained that the doctor who could release the CD was out of the country, but they had an urgent call in to him and were waiting to hear back.

Many times the necessity of having another MRI done was discussed.  It would start with various doctors who'd come to examine Tessie explaining to me that it was likely that the images from a research study wouldn't be as well done as the ones they would need and so we would have to do it over again.  I would nod.  Then they would say, "but putting a baby with central apnea under general anesthesia can be very dangerous.  Because of the breathing."  

Because she might stop breathing, my brain would fill in.  

"So we can wait for the CD and see what it says." was the conclusion reached over and over again.  As long as she continued to do well, we could wait.

Yesterday it arrived.

I'd gotten a phone call from her neurologist's office asking me to bring it in the moment I got it and ask for K-.  K would take the CD and make a copy and then I could keep the original in case any of her other doctors wanted to see it.

The minute we got it I loaded the kids in the car and headed to the neurology office, stopping to pick up Paul on the way.

I'm not sure why what happened next was so amusing to me, because on another day I think I would have been frustrated.  Maybe because it feels like we've been through a lot and so it seemed fitting that dropping off the CD wouldn't be as simple as it probably should have been.

Here's what happened next.

Me: "Hi.  Is K- here?"
Receptionist: "K?"
Me:  "Um... K, Dr. D's... person?  She called and said to bring this in and ask for her so that she can make a copy of it?"
Receptionist:  "Oh!  K.  I'm not sure we can make a copy.  Let's see. She was supposed to go home early today but let me see if she's still here."  (disappears and then reappears a few minutes later)  "Okay, so here's what we'll have you do.  I'm going to point you in the direction of radiology.  You take that down to them and they are going to scan it and upload it to the system so that he can see it right away."

Five minutes later having traveled down to radiology and waited in line.

Me:  "Hi, neurology just sent me down here.  We have this MRI for my daughter and they said that you guys would scan it in so that the doctor could see it."
Receptionist (makes phone call and repeats what I just said, says "okay, thanks." and hangs up the phone:  "Actually we can't do that.  It's actually in violation of HIPAA law. If she'd already had a scan here we would be able to do it.  But she hasn't.  Even though she's in the computer.  So we can't do it."
Me:  "Yeah... she's in the computer because she was in the PICU last week.  They couldn't do an MRI because she might have central apnea and they were afraid she would stop breathing under sedation.  But we have this one which was done as part of a study not under sedation. It took two nights to get..."
Receptionist: "Sorry."
Me:  "Thanks anyways."

Trudging back to the elevator then back to the neurology office I run into someone from radiology who is certain I work for the neurology office and it takes several tries to convince her that I'm not kidding when I say that I don't.

I'm just here a lot.  

Back in neurology...

Me:  "So.... radiology says scanning this is a HIPAA violation."
Receptionist:  "I was just on the phone with them before I sent you down!  They told me they would do it!"
Me:  "I think maybe I didn't talk to the same person you did.  So how about I leave this here with you?"
Receptionist:  "And I'll make sure the doctor sees it and we'll mail it back to you once we get it scanned."

And there you have it.  Getting it wasn't easy and getting it to the doctor was more difficult than I imagined but it kind of fits with the way things have gone (twists and turns and then ultimately working out) and I am relieved to have put that thing in their hands.  And I'm relieved that I did not have all five kids with me while I tried to figure out where it went.

And I'm really thankful to everyone from the doctors to the receptionist at her neurologist's office who made it work so that they hopefully will be able to use this CD since it's what everyone thinks is best for her if there's any way that it can work out.

Now I'll be over here praying that that CD looks entirely normal and that I get that call soon!

December Memories and Worries

December is flying by and winter break is already here.  Here's the latest news.  It's almost a Quick Takes but I couldn't wait until Friday.  

For the first time since the girls were tiny we got pictures taken at the mall, this time with a "sensory friendly Santa."  We'd signed up in advance and showed up on Sunday morning before Mass.  I was impressed when we saw that there was a waiting area with tables with coloring sheets and crayons, snacks, a play area, and a movie area with bean bag chairs everywhere.  

And this?  One of my all time favorite pictures.  

We almost had tears when Patch thought that he wasn't going to get to sit next to Sadie, but when he found out he could sit with her disaster was averted.

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I snapped this on one of the last days before our world became an icy winter wonderland.

James was a big fan of autumn.  He is not a big fan of winter.  I have yet to convince him, even completely bundled up in snow clothes, to play outside in the snow.  He cries when I suggest it.  He is incredibly suspicious of snow.  He'd spend hours outside in the non-snowy cold.

But snow?  Not a chance.

Puddles are more his thing:

We attempted to make gingerbread houses.  I'm not sure that you can say they were a success but the kids did think that they were tasty.

And I was ridiculously excited that I could buy the gold chocolate coins for Saint Nicholas Day this year.

Patch and Tessie are adorable together.  Last night Patch told me:

"Mommy, I love Tessie so much.  I love you so much Tessie.  Mommy.  Tessie's touching my ear.  No Tessie, no.  Mommy, tell Tessie no touching my ear.  You need to have a talk with Tessie."

Tessie also had her first neurology appointment.  I came home with a to do list.

The main concern wasn't her lack of eye contact or missed milestones. The main concern at this appointment was her "hypersomnia" or the fact that she sleeps a lot, around twenty hours a day.

Who knew that a baby could sleep too much?  Not me.  I mean, with my other kids it wasn't something I ever thought of.  After all sleeping too much?  It sounds kind of nice.

Apparently too much sleep really can be too much of a good thing.

During the appointment at one point her doctor said, "Does she really sleep that much?  I mean, she's awake for this appointment."  And I pointed over to where she'd fallen asleep in the ninety seconds since he'd finished his neurological exam.  After that he started ordering tests.

After the appointment I scheduled the sleep study.  I took her to get her lab work done, and I set dates for Missouri and Massachusetts for the MRIs and EEGs.

And if I'm totally honest I have to admit that I expected that the blood work would come back entirely normal.  After all, we've gone through all this before and it's always been normal.  And when I didn't hear anything for a little over a week I forgot about it.

Then we got a tree.

Now, a tree around here is a big deal.  Last year was the first time we'd gotten a real tree.  In the years before we'd put up a little fake tree, on the fireplace mantle, while praying that Maggie wouldn't somehow destroy the whole thing.

Last year we got a real tree, that was fairly big, but we put the tree up on an entertainment stand where it was less tempting.

This year we got a big tree and bolted it to the floor.

And she hasn't touched it.  A certain toddler has taken apart a few ornaments but other than that it's in one piece.  We're all pretty thrilled.

And we celebrated Saint Lucia's Day.  Sadie managed to slip downstairs with me before anyone else was awake.  She walked upstairs through the bedrooms with only her crown lighting the way and it was really fun.

The highlight for me was James who was laughing and calling "Sadie!  Sadie!" from his crib the moment her crown of battery powered lights came into the room.

Patch was a shepherd in his preschool nativity play.

We didn't have anything shepherd-ish so I sewed him a costume.

Paul pointed out that he looked more like a little Jedi than a shepherd.  So I googled Jedi images and realized that he has a point.

James maintained his title of "Grumpy Baby" by coming with me the last two times I've gone shopping and shouting "Don't touch that!" every time I reached to pick something up.

Is that really what I sound like, James?

He also had an OT evaluation (for sensory stuff) and got measured for new orthotics because his are already painfully small.

He's enjoying wearing the clogs that his orthotics wouldn't fit in while we wait for the new ones to be made.

Another highlight was a special sensory friendly night at the local zoo.  There was Christmas cookie decorating, soup, ornament making, and a walk through the snow to look at all the lights and Christmas trees.

The other sensory friendly event we went to this month was a sensory friendly airing of Moana.  When we walked in I whispered to Paul that I thought we had a 50% chance of success (despite the flier that said that screaming and running were fine).  He whispered back that he thought our odds were closer to 10%.

The last time we tried a movie, in June, Maggie was immediately overwhelmed and grabbed my hand and begged to go before the opening credits were over.

This time with the lights turned up and the sound turned down she sat, completely silent, in her seat for the entire movie, with a huge smile on her face.

I am so grateful for all the sensory friendly opportunities we've had lately.  As she's getting older we're able to go out and do so much more.

The highlight of the month for the kids has been the snow.  They can spend hours in our backyard sledding from the top of the hill to the bottom of the yard.

Patch is determined to shovel the snow out of the backyard like Daddy and Mommy shovel the driveway.

Speaking of shoveling the driveway I was surprised when I arrived home today to find myself stuck in the snow.  I was surprised because we'd shoveled the driveway and it hadn't snowed today.

However apparently one side of our house is a wind tunnel and the wind moved a massive amount of snow from the side of our house (where nearly a foot of snow is now bare grass) to the driveway where I opened the door and found myself up to the tops of my boots in snow, trying to figure out what happened (I was confused for a solid ten seconds).

I know it's windy here but I didn't know it was move all the snow from the side yard to the front yard windy.

Which brings me to this week.

Earlier this week I got a call from our neurologist's receptionist.  I actually started completing her sentences in my head before she said them.  This office calls about all their test results and he sees both Maggie and James so I've gotten this call quite a few times and I wasn't expecting anything abnormal.  "Hi Mary-Therese's mom?  This is the receptionist from Dr. D's office.  We got the test results and their normal."  I said the last sentence silently in my head before she said them.

Except she didn't say them.  She said "We got the test results and the ammonia levels in Mary-Therese's blood are elevated.  Dr. D wants you to call back if you haven't heard from us the week after her sleep study to run more labs.  Make sure not more than a week passes."

I got off the phone and told Paul that he couldn't be too worried if the was willing to wait a month for new tests.

Today my phone rang. It was the nurse from the same office calling to tell me that James' orthotics prescription had been faxed in.  I thanked her and hung up.  Then I kicked myself for not asking her about Tessie, because I've spent the week worrying about what high ammonia levels in blood tests mean.  Five minutes later the phone rang again.

It was the same nurse.  She was calling to tell me that the doctor had reviewed the tests and Tessie has elevated ammonia levels in her blood and that I needed to take her in for blood and urine tests, to check amino acids and organic acid levels.  This time I did ask her what high ammonia could mean and she said that she didn't know and he hadn't made any notes of what he might be thinking it meant.

I got off the phone and got the kids loaded into the car and picked Paul up at his office so that he could watch the other kids and took Tessie in for the tests and now we're waiting for the results.  

She is still my perfectly happy cuddle bug.  But I'll admit I'm worried at this point (google is not my friend) and I'm really praying that the next phone call comes quickly and says what I expected the last one to say.  I'm ready to hear "We got Mary-Therese's test results and they're normal!"  

If only I could combine James and Tessie's hours of sleep and divide them in two... then everybody would be getting a good nights sleep without going overboard (and without waking up like a certain toddler sometimes does).  

Jamsey

This child.  It's been a whirlwind of a summer. 

Somehow he's spent the last few months collecting new doctors and therapists the way that some people collect Pokémon. 

To be honest, while he definitely has a gross motor delay, I find myself not overly worried about whatever it is that's going on. 

Since I haven't blogged much lately, and to have my thoughts gathered all in one place, so that at some future date I can look back and chuckle that we were worried at all,I'll give a little bit of background. 

Between the ages of three and five months old we noticed that James seemed kind of floppy for his age.  He wouldn't hold his head up.  We needed to support it like he was a newborn (right now Tessie has better head control at seven weeks than he had at six months).  We were introduced to words like hypotonia and hyperflexible by his pediatrician, who kept a close watch on him. He spent an enormous amount of time on his tummy, but it made not difference. 

When he still wasn't sitting up unsupported at ten months, his pediatrician decided it was time to be a little more proactive in making sure nothing else was going on.  He was bombing just about every category on the ASQ (ages and stage questionnaire) by then and as I watched my ten month old, who couldn't sit up in a high chair by himself, I was starting to worry.

His doctor referred him to the same neurologist that Maggie sees and also referred him to our state's early intervention program, where he was assessed and found to have a more than 20% delay, which qualified him for physical therapy.  The neurologist ran a few tests and said to come back in a few months. 

At physical therapy we found that he strongly preferred his left side over his right.  If there was a way that he could avoid using his right arm and leg, he'd find it.  Having a preference of one side over the other isn't a big deal with someone who's older, but it isn't supposed to happen with someone who's teeny tiny. 

After watching the left side preference and low tone for almost a year, James' neurologist sent him for an MRI.  And after one very long day and a weeks wait, I got a call from an assistant at the neurology department telling me that everything looked fine except... (the next few seconds were some of the longest in my life) he had a sinus infection (sigh of relief) and I should call his regular pediatrician so that we could see if she thought it needed to be treated (by then it didn't). 

A few months ago his physical therapist and neurologist decided he needed orthotics.  He'd started walking a little after eighteen months, but his feet turned in and his ankles rolled in wildly, making him trip every few steps.  In the beginning his entire right side would give in, causing even more falls, but that's improved drastically in the last couple months, although he still falls every minute or so. 

A few months ago his neurologist and pediatrician both decided separately that they would be writing referrals for genetic testing and in September he'll finally get in to see the same geneticist that Maggie saw in April (we're still waiting on test results to process for her). His neurologist doesn't want to do anything until the genetic results are back.  After spending five minutes trying to get a single reflex response from James knees and ankles and getting absolutely no movement he mentioned a test involving sticking needles in muscles to see how they're working, but we're avoiding that at all costs, since he said it'd be pretty unpleasant. 

This week he'll be seeing a orthopedic specialist to make sure there's nothing else that needs to be done about his toes insisting on pointing in.  He's also been seeing an early interventionist (kind of a general therapist who works on gross motor and fine motor and speech and social skills with him) and will meet his new physical therapist this week.  And most recently there have been suggestions of adding OT to the list, which I'm hoping he doesn't need... but will go along with since I know that therapies at this age can mean far less therapy later on. 

In a lot of ways it's odd because he's the polar opposite of Maggie, who took her first steps at ten months and was climbing up on top of Sadie's giant bouncy horse and riding it when she was barely one. 

Still, as I watch the determination with which James has faced these challenges that seem just a little tougher for him than they are for everybody else, like rolling over or sitting up or walking, I can't help but feel like it's all going to be okay.

Although if you want to throw up a prayer that maybe he stops adding new doctor's appointments to the schedule, and keeps growing healthy and strong, I would most definitely appreciate it. 

All Things James

James had an MRI a week ago and I documented it in pictures sent to Paul via my phone while he had a lovely time at home wrangling everyone else to get them to where they were supposed to be, while I sent him frowning pictures of a very unhappy toddler.

 Mostly unhappy, at least.  Although we started out strong:

Our six a.m. registration was a breeze:

My stress level was much higher than it had been when Maggie had her MRI.  Maggie, being Maggie, just seems so much tougher and is so much bigger than James is.  And James, having had low tone and hyperflexibility for so much of his life, seems so much younger sometimes than he actually is (and obviously it's not like he's that old anyways!).

We didn't expect the MRI to be abnormal.  It was just to rule out any of the problems that would be visible in an MRI that would cause him to favor his left side over his right side, so strongly, at such a young age (although we've seen serious improvement with that lately.  It's not nearly as dramatic as it was six months ago).

But I'd asked the neurologist if he really, really thought it was necessary and he said that he did feel that at this point, after tracking James' progress for so long, that it was something that we needed to do.

And so we went in.

I realized early on as we met with the pediatric anesthesiologist, that James would not be charmed like Maggie had been.  It was the same anesthesiologist we'd had with Maggie, and he'd completely won her over when she'd been in a very, very bad mood.

James could not be convinced to smile.  At all.  He did try to eat the bubble wand that he was allowed to hold while he was getting his IV though:

The time between getting the IV in and his sedation was a full hour.  That was the toughest part.  I managed to bribe him to mostly be still with an episode of Bubble Guppies.  But then he'd glance down at his left arm, where they'd gone through the vein during the first IV attempt, and he'd see the band aid, and then he'd look over at his right arm, which was entirely wrapped up, and he'd be furious again.

The MRI itself was utterly uneventful. 

He did look incredibly tiny when they were hooking him up to oxygen and monitors and putting him in the machine.  That was the hardest part.

And then it was over and he was back out.  They had me crawl onto the bed with him, because I was having not-so-fun contractions, and people were getting pretty nervous about me having the baby right there in the MRI department, and so they suggested I lay down next to him and talk to him as he woke up.

Except he didn't want to wake up.  The sedative should have been out of his system but he was determined to nap.  Only when I moved a little bit away from him once we were back upstairs, did he begin to stir.  And  he woke up and had some popsicle and some apple juice and all was right in the world again:

Today as we arrived at the house for more packing, my phone rang.

I picked it up and heard a woman identify herself as being from the neurologist's office.  Then she said "The results of James' MRI are back and everything looks good, except that we could see fluid in his..."

And then, because we were still in the car, Patch started talking loudly behind me and I could barely make out a word she said.  I finally was able to hear "sinuses" and got everyone to stay quiet long enough to learn that his sinuses were what was filled with fluid (thankfully not anything scarier) and that I needed to call his pediatrician's office to see what they want to do about that (it explains why he's slept horribly for the last week).

But the important thing is that the MRI looks good!

Now we need to wait three months for him to get in to see the same geneticist that Maggie sees.  Everyone from his pediatrician to his neurologist seem to think that's likely where we'll get actual answers if anything is going on beyond some little quirk causing developmental delays.

I was thrilled to learn, when that particular office called, that the wait list was only four months.  Last time it was seven months... so far is a huge improvement.

In other random James' news, his orthotics should be here any time.

But after writing all this I do think I should say that overall he's really been steadily improving in every area, from gross motor, to fine motor, to his social skills.  He's still not all that interested in words most of the time, but he busts out a few now and then and sometimes I think we just have late talkers (like Patch, who talks just about non-stop now).

He is totally her baby.

The description I give at our different appointments for his progress is that he's steadily learning and growing and moving forward.  It's just that when I fill out the Ages and Stages Questionnaire (basically a questionnaire about milestones in different categories) for each of his checkups I'll start out totally confident that he's really, really caught up, and then I'll start answering questions and he'll still only be able to do between one and three of the six to nine things he's supposed to be able to do for his age.

And so I'll tell the doctor that we really haven't quite got all the eighteen months milestones down (as she can see) but he can totally blow the twelve month milestones out of the water now. And those six month ones that he couldn't do at seven months that set off the first little alarms of worry?  Totally mastered.  So he's getting there.  Just a little bit slower than we expected.

And now, since it's late again, here's one last picture of one of my favorite frowns.  He still hasn't given up frowning at my camera and then laughing when he sees pictures of himself on it:

On Staircases and Emergency Trips to Pick Up Baby Gates

Yesterday was one of those days.

The kind when you frantically message your husband on Facebook and say something along the lines of "I need you to go to Target and pick up the new baby gate that I just ordered and paid for online and bring it home as soon as you can and assemble it in place of the old gate across the stairs because it's just not working anymore!!!!"

Only in real life the message was split up into a dozen small hastily sent fragments, typed with one hand while making sure the baby didn't attempt to lay siege to the stairs yet again.

I'm pretty sure it was "one of those days" because Saturday was so perfect and everyone had been absolutely and completely on their best behavior at the exact same time all day Saturday.  The scales of the balance needed to swing back a bit in the opposite direction to even things out.

Is it strange that while I was picking out the baby gate on the website while scanning for the words "in stock now" I was estimating how long it would last?

Ah yes, an accordion style wooden gate.  Are those metal connecting pieces?  I think so.  We've had two of those... it might last for... six months before they destroy it.... six months is a good run for a baby gate in this house.  And it drills into the wall.  None of those pressure plates.  Ridiculous.  The kids can take those out in an afternoon.  Let's do it.

Except it arrived with only plastic wall connecting pieces... so maybe it'll only last four months.  Or two.

Maggie and James are as thick as thieves.  He looks up to her and has apparently decided to follow in her footsteps... straight up the walls.

When Maggie was tiny she started climbing things.  Of course, she walked first, taking her first steps at 10 months and walking across the room on her first birthday.

James has decided to skip walking and go straight to climbing.

On Sunday Patch and Maggie spent the day opening the baby gate (which apparently wasn't all the "baby" proof anyways) and encouraging him to sprint climb our stair case before I could get to him.

He's surprisingly good at it.  He's also mastered reckless climbs up onto the dining room chairs and the couch.

Falling does not appear to deter him in the least.

The new gate, at three feet tall, doesn't deter Maggie in the least.  She can easily swing herself over it in a matter of moments.

James and Patch, on the other hand are now stuck downstairs until I lift the handle.

Which reminds me, I still haven't blogged about James' latest doctor's appointment.

At James' last neurology appointment he narrowly avoided being sent for a sedated MRI.

He's a big fan of his left arm and his left leg.  He's not a big fan of using his right arm or his right leg if he can help it.

He drags his right leg a little when he pushes his little walker during PT, and his right ankle tips inward and wobbles wildly from side to side and forward out over his toes.  And while he demonstrated great fine motor skills with his left hand, he carefully avoids using his right.

However at his neuro appointment the neurologist offered him a marble, but only if he took it with his right hand.

Apparently James had never ever seen anything in his life he wanted (to eat) as much as that marble and he was willing to use his right hand to get it if that was the only way it was going to happen.

Then we had to wrestle it away from him as he clung on to it for dear life and attempted to pop it into his mouth.  His grip on his right hand seems just fine when he does use it.

So he bought himself a three month (and hopefully forever) reprieve from going under for a look at the part of his brain that controls gross motor movement.  And I'm supposed to call when he started taking steps on his own, or after his next PT appointment depending on whether his PT wants to wait until he's up and about or get them right away, to get a prescription sent over for orthotics for that wobbly foot.

And as you can probably tell from the start of this post, both his right arm and leg seem perfectly capable of climbing our very steep staircase, so I have a feeling by his next appointment he won't need that MRI at all.

Uneven

I finally got the picture that I've been hoping to get for months.  

I've described what Maggie's eyes look like over and over again to doctor after doctor.  I'd been told it would be helpful if I could get a picture, but getting a picture when she's having a migraine isn't the easiest task.

Last week she came home after a rough day at occupational therapy.  Usually we hear about how great OT has gone and she's always incredibly impatient to go, so I was surprised when Paul brought her home and said that it hadn't been great and they were wondering if OT should be stopped.

While I tried to keep my head from exploding, and hoped that maybe something had been lost in translation when Paul brought that particular gem (because I find it hard to believe that the child who cries hysterically in pain every time her sister coughs doesn't need sensory focused OT), I took Maggie up to our room and noticed that she definitely seemed a little under the weather.  She lay on the bed while I hung Christmas lights on the windows and set up a line of little fake candles on the window sill.  

She was quiet, but happy to watch the lights and look out the window.  

After a while I lay down next to her and let her look at herself in the camera on my phone.  She loves to do that:

It wasn't until the next day, when I was looking at the pictures, that I realized what I'd captured in the pictures:

Here's an example of a moment when, after being in a bright room for about fifteen minutes, her eyes weren't dilated to the same size.  This is what all the doctors' appointments have been about.

It's a relief to finally have a picture to show the doctors what so many family members and therapists have seen over the last eight months.

I think it's very likely migraines, as the doctors have suggested.  I'm so thankful the MRI was normal.  She does have some moments that seem like they might be absence seizures, so we're keeping an eye on those, although I can't imagine that we'll be able to perform the test the neurologist would want to do to confirm those (Maggie, holding still for half an hour with sensors attached to her head?  I don't think so).

Now hopefully, after a rough week last week, we'll have a migraine free week this week!