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:

Autumn, Appointments and Editing

This week is a whirl of appointments and phone calls that I need to make that I'm impatient to be done with.  Last week was basically the same thing, and I went to my very first IEP meeting (for Patch) so that he can transition into speech next month when he turns three, although he's having a language explosion quite suddenly and the speech therapists aren't sure he'll even need it much longer.

This is the best swing ever made.  The big swing and little swing are attached so when I swing it swings Patch.  Or preferably when Sadie swings, so I can push James on the other swing!

The big appointment, that I'm going to ask for prayers for, is on Wednesday morning.  The neurologist wanted an MRI done to make sure nothing else is going on with Maggie, but of course that involves her being sedated, since there's no way she could hold still for any length of time, much less that much time, and so we're heading in to the hospital that morning, along with one of her therapists who's going to come along to help.

Her rain jacket is her fashion accessory at the moment.  Inside, outside, anytime.

James has his one year well baby check, which makes me nervous, because every time I think he's doing really, really well with his PT, he gets checked out and I'm assured he does still very much have hypotonia and hyperflexibility, even though he's come such a long way in the last two months. I mean he's cruising along the couch now, which is huge since he still could barely sit up in a high chair two months ago.

He still likes frowning at me when he sees my camera though.  I suspect because he's plotting ways to steal it and chew on the case.

In other appointment related news, I got a phone call from the genetic counseling office (also because the neurologist wants to eliminate other possible things going on with Mae) and took their next available appointment... at the end of April 2016.  At least that isn't on the schedule for this week.

But none of this is the reason I haven't been blogging lately.  The reason for that is that I'm in the proofreading the first draft stage of the book, and that's where all my writing energy has been directed this past week.

And I'm also turning my mind towards trying to find an agent for the book, and trying not to panic about query letters because apparently writing a one page query letter is far, far more intimidating (for me) than writing an entire additional book.

The other thing distracting me from posting is October.  It is my favorite month of the year in Michigan (with September coming in a close second).  So I'll close this post with a few of my obligatory yearly "It's autumn in Michigan" photos that I've snapped this week as we begin to feel winter rapidly approaching and I'm enjoying the swirling leaves before they're buried under snow (I mean neatly raked into piles and bagged...)!

If I keep up the current editing pace of one chapter a day I should be done in a little over two weeks and I'm hoping then I have a little more energy for things non-book related!

As long as these leaves and the crisp cool air stops distracting me!

The 10 Month Old Hyper Flexible Baby

James hit ten months a week ago, which I find hard to believe since it seems like he was just born a couple of months ago.   

He celebrated the day before his birthday with a visit with his physical therapist (okay, celebrated is a strong word).  I thought, going into the appointment, that it was likely that it would be our last one.  At our previous appointment, before we went back to California, his therapist had said she thought there was a very good chance he'd be caught up by the time we got back and he has been working so, so hard to do things like belly crawl across the room and prop sit.  

In fact in the days before the appointment he'd prop sat by himself for about five seconds and started to make his way on his tummy from place to place. which were both big steps.  

I'd been worried at the last meeting after hearing the terms fine motor delay, gross motor delay, possible speech delay and social communication delay thrown around.  This time I knew we'd come a long way.  Gross motor was my only real concern that remained.

His therapist, who is wonderful with him, asked me questions as she played with him and then she began to ask when he'd be going to see his doctor again.

As the appointment went on she confirmed that he has low muscle tone and is hyper flexible, especially in his legs.  I knew he was hyper flexible since when I would try to sit him up his legs would go totally flat out to the sides (think like the butterfly stretch with your knees touching the ground) and he'd fall forward so that his face would hit the ground.

While we watched him belly crawl to get a toy we both realized that he was only using his left leg (and he wasn't using it much at all), and he was dragging his right leg behind him as he went (and in the days since I've watched him and realized it's pretty much and all the time thing.  Even when he lays on his back and kicks he hardly moves that right leg at all).

So she told me to make sure to ask if they'd tested things like protein and iron, his kidneys and liver and thyroid, just to rule out and physical causes.

I'm not really worried.  He is making progress and he seems happy and healthy.  He's my third consecutive laid back baby, except around 9 pm when I try to convince him he needs to go to sleep so that I can write while I sit next to him and he tries to convince me that he needs to stay up so that we can cuddle more and blow raspberries.

It's kind of odd to think that Maggie took her first steps at 10 months and he's not quite crawling.  Although he sure is trying.

I'm not sure I've had a child who's been worn as much in a wrap or who's had as much tummy time as this little guy.  I started the extra tummy time early, because his head was so, so wobbly for so long (like only a little better than newborn wobbly at six months... thank goodness that ended).

So now we wait for the doctor's appointment the first week of September.

There's one thing I know for sure, he definitely is motivated to move around the house since he wants to be in on the action with her brother and sisters.  He plays mermaids with Maggie and cars with Patch and despite moving rather slowly, he is in to everything.