Monday, May 16, 2016

Molly Mermaid and the longest conversation we have ever had

Today Maggie was finishing up her morning bubble bath when she started to cry.  The following conversation is the longest verbal conversation that we've ever had in the almost six years since she's been born.  

Me:  "What's wrong?  Why are you crying?"
Maggie:  "Molly.  Towel!" 
Me: (using a towel to dry her hand and face) "Here's a towel.  Do you want to get out?"
Maggie: "Get out... Crying."  
Me:  "Why are you crying?"
Maggie:  "Sad."  
Me: "Why are you sad?" (remembering the beginning of the conversation)  "Oh! You want your Molly doll!"
Maggie:  "Molly!"  
Me: "Here, let's get out.  Let's dry off.  We can find your Molly doll."
Maggie:  "Towel. Dry off."  
Me: "Let's find Molly. I think she's in my room." 

Two minutes later we'd found where she had hidden her two Molly Mermaid dolls and a small Fischer-Price doll that she calls "Maggie" and like that the tears turned into smiles and she was ready to get ready for school (therapy)... which she began calling "Mermaid School" this weekend, during the fifty times that she asked me to take her (that would be very close to a literal fifty times... if we didn't exceed fifty, which is a very real possibility).  

Thursday, May 5, 2016

The House

Finally!  The kids are in bed, the dog and cat are napping in the living room while I type, and I have a chance to put together a post about the new house.  

We began house hunting a couple of months ago.  The first house we went to see was a beautiful old farm house surrounded by lovely red outbuildings and a huge barn.  Patch loved the barn.  

Unfortunately, while the one hundred thirty year old house had obviously had many renovations, there was one problem that we couldn't ignore... none of the floors were level.  

After seeing many others that often reminded me of the stereotypical stories you hear about online dating ("This looks absolutely nothing like it did in the pictures!  Were those pictures taken twenty years ago?"), we came across a newer house and fell in love.

And it has central air.  Do you know how hard it is to find houses for sale with central air here?  Amid the houses we saw, houses with central air were few and far between.  After almost four years in a house with one air conditioned room (downstairs) that central air was a major selling point.

The house is supposed to close in less than a week now and I'm impatiently awaiting the day when we can begin to move into a place with a finished basement and a huge yard, with lots of room to play:

Here's the downstairs:

And the upstairs:

 And the basement:
I've been formulating a to do list that'll start next week if all goes smoothly with closing.  The glass shelves in the dining room will be taken down ASAP.  All the walls are getting a coat of protective clear coat because Maggie is hard on walls and nothing I've done seems to change that.  And we're meeting with a fence company at the end of the week to discuss the massive fence that is going to go up around the backyard.

It needs to be Maggie proof.  If that's physically possible.

Wednesday, May 4, 2016

James, Maggie, Important Appointments and Other Updates

I flew through the MCHAT in the waiting room before James' appointment, keeping one hand behind his back as he tottered on the edge of a chair, staring at the tiger barbs zipping back and forth across the top of the pediatrician's fish tank.

"Fish!  Fish!" I said.
"Ahhh!  Ahhh!" He replied.

He nearly always responds with vowels when I try to convince him to say a word. Even if it's Mama.

I'd already finished the ASQ at home earlier in the morning and while I knew he would be flagged as failing every single category, in particular gross motor skills and speech, I also could see that we were making some progress.  He could do two of the six expected skills for 18 months "some of the time" instead of being unable to complete any of them.  That was huge in my book.

During the appointment itself, both the pediatrician and I were distracted.  We were having major problems with one of the other kid's medications and had been frantically playing phone tag all week.  We skimmed through James' checks, because most of the problems that were obvious were already being addressed by his neurologist.

By then he'd already been checked out by the med student of the day.  I'd quickly given him a run down of his history.

At eight months they noticed he had hypotonia and hyperflexibility.  At ten months he started physical therapy with Early On.  He heavily favors the left side of his body over his right and avoids using his right arm and to an extent his right leg, as much as possible.

We know his speech is delayed and Early On is monitoring it.  He'll be meeting with a speech therapist soon. He just started walking, but his right foot turns in and pronates in dramatically, which makes him fall frequently.

Next week the neurologist will be writing a script for orthotics, because we've given it three months and it hasn't improved on its own.  He has been tested for muscular dystrophy, and the neurologist said the blood test ruled that out.

It was the same as every other Well Baby Check.  I go over what's happened so far and they say to keep seeing the neurologist.

We hustled from that appointment to another appointment, and I didn't give the Well Baby Check another thought.  There are appointments that I worry about.  Well Baby Checks are not high on that list.

Two days later I was coming out of Maggie's appointment with her new geneticist when my phone rang.

That was an appointment I'd worried about.  We'd taken "the next available appointment" when we'd scheduled it back during the first week of October.

It had been seven months out.  I was constantly checking the calendar to make sure we weren't going to miss it.  When it takes that long to get in to see somebody, you want to be absolutely certain you're there.  And I'd been warned that they don't always call to confirm.

At that appointment the geneticist said that he didn't think she had Angelman's but that she had definite markers for Angelman's, which has to do with missing information on the 15th chromosome.  He threw out some other possibilities, like Fragile X and I made mental notes to research the suggestions he was making when I got home.  I already knew a bit about Angelman's because if you Google all the symptoms that James has that's what comes up with a pretty much 100% match, but I hadn't read anything about it for a while, and I definitely needed a refresher.

He said he thought the odds were 50-60% that he'd find something significant when the blood work came in, but that it would take a month to get the blood work approved and then another month to get the results in once the blood had been drawn.

We left that appointment and I was just about to walk into Aldi, when the phone rang.  I recognized the number as our pediatrician's office and expected to hear a nurse or social worker on the other end of the line when I picked up.  Instead it was our pediatrician calling.

She explained that when we'd been in the office the computer system had been having problems and the results for the MCHAT hadn't come back right away.  In my head I thought "No big deal, he totally rocked the MCHAT." but of course, if he had, she wouldn't have been calling me.  Developmental Pediatrician's don't usually call themselves to tell you a little test like the MCHAT is great.

Perhaps this shows how relative "normal" is in our world, because while I thought he'd done great he'd actually scored extremely high (which is apparently not good) with three critical flags, and I needed to call the schedule a ADOS (the autism evaluation test) as soon as possible.  I already knew from a conversation with Maggie's social worker, that they were booked three months out and had a wait list for appointments beyond that point, at the place where he would need to go to be tested.  

A few days later I gave the update to his neurologist while he wrote the script for orthotics, ordered a sedated MRI, which he deemed necessary on two points, most especially because of the right side weakness, and explained that if his right leg continued to do what it is currently doing we'll need to refer him over to orthopedic specialist to look into other causes.

Oh and if the hospital couldn't get him in for sedated MRI in thirty days I'd need to take him back for another physical.  Of course.  Because you need a physical within thirty days for sedation (that's why Mae had been seen that very morning).

Yesterday, as I climbed into bed, I thought about Maggie and James and how the two of them communicate, flawlessly.  She adores him and the feeling is mutual.  They are inseparable.  They think that the same things are funny.  They play together constantly.  And their communication is seamless.

So maybe there's more to those MCHAT results than I first imagined.  After five phone calls he's off the waiting list and will be tested in mid July.  And then we'll start to get answers about whether he and his favorite playmate have even more in common than we'd guessed.

Tuesday, May 3, 2016

Our Dramatic Saturday Evening

In the post about Sadie's first communion I mentioned briefly the trip to labor and delivery that I took on Saturday afternoon and how it really deserved it's very own post.

But it all really began on Friday night when just before bed I noticed some light spotting.

This is different, was my first thought, only because usually I don't have spotting in the third trimester.  There was no reason for the spotting, other than maybe carrying James around more than usual.  I didn't call my doctor though.

After having subchorionic hematomas during two pregnancies (and likely during Patch's too, since I had spotting at 6, 10, 16, and 24 weeks with him) spotting doesn't send me into a panic like it used to.

Sadie's First Communion was beautiful, but I spent a good portion of it wrestling with Maggie ("No, we don't touch the shoes of the person in the pew in front of us!  Even if we're being very quiet while we're doing it!"), who despite her best behavior was still a handful and I also spent it not drinking the 60 ounces of water that I normally would drink before noon when I'm at home.

We stopped by the house to get new clothes for a certain eighteen month old, since he was covered from head to toe in frosting and cake, and I ran into the house to use the bathroom.  When I stood up there was a rush of fluid.

I froze.  I waited.  It had stopped.  It had only lasted for a moment.  I held very still.  I felt completley normal.

As I collected James' clothes I was nervous.  When my water broke with Sadie it was only a trickle, far less than what I'd just experienced.  When it broke with Patch it was more like it was in the movies, where it goes on and on and you wonder how much amniotic fluid can be around one little baby.  This was somewhere in between.

I changed and made sure I had everything we needed to go out to lunch like Sadie had requested.  Then we left.  In the car I whispered to Paul that I thought maybe my water had broken, but I wasn't sure, so I guess we'd wait and see if anything happened.

At lunch everything was fine.  I didn't have a single contraction.

After lunch Sadie asked to drive down and look at the new house (which still deserves it's own post, but I'll share one picture in this one):

At this point the worry that my water had broken seemed far away.  I'd probably just had one of those accidents that sometimes happens when an increasingly large baby is sitting on your bladder doing gymnastic exercises.  Even if I had used the bathroom approximately thirty seconds earlier...

So it didn't worry me that while our current home is less than a mile from the hospital, the new house is about half an hour away.  After all, everything seemed fine.

We were almost to the new house when the first real contraction hit.  That this was a real laboring sort of contraction, I had no doubt in my mind.  I'd never even felt contractions like this when I was in labor with Patch.

This was a contraction of the variety I had shortly before Sadie was born.  I looked at the time and recorded it on my phone.

But it was only one. And by the time the second one hit, four minutes later, we'd already driven by the house.  The third one was three minutes later.  When the fourth and fifth and sixth came, two minutes apart, I told Paul to turn the car and head straight for the hospital.

I called my OBs line and about fifteen minutes later go a call back from the doctor on call at the hospital.

"I know what you're going to say but... I thought I'd call anyways.  I'm 30 weeks and 5 days pregnant.  I had some light spotting last night.  Around lunch time I had a rush of fluid, but I wasn't sure what it was... and now two hours later I'm having contractions that are two minutes apart... They've been that close for almost half an hour now.  Okay, that's what I thought.  We'll be there as soon as can."

And of course she said to come in immediately.

The next half hour was excruciating.  The contractions were like clockwork, every two minutes, and they were increasingly horrible.

By the time we arrived at the hospital and I said goodbye to everyone I was certain I wouldn't be coming home any time soon.

They whisked me into triage and checked the baby.  She sounded good, but she was transverse, so they had a hard time getting the sensors to stay in place and pick up anything.

I lay on my side and waited.  Laying down was much, much better.  The contractions stopped, altogether, almost immediately.

See, I thought to myself, if I just went home everything would have been fine.  Except I knew going home when the contractions were that strong and that close together hadn't been an option.  Not at 30 weeks.

Both the resident and nurse were convinced that my water had broken, and immediately ordered three tests to confirm it, all of which came back negative.  I was a little bit dilated, more than I had been in the past, but not enough to worry about.

This didn't totally reassure me.  When my water broke with Sadie all the tests came back negative too, for hours after it had happened.  It wasn't until I was being wheeled in for my c-section after five hours of pushing that there was a rush of amniotic fluid that was actually detectable.

The resident was worried that I had a tear at the top of the amniotic sac and that a little fluid had leaked out.  She did an ultrasound and the fluid levels still looked in the range of normal.  Baby's head was squarely against my right side and her feet were squarely against my left (she's our third baby that spends almost all her time transverse).

She explained that all the tests were negative but she just had a gut feeling after everything that had happened that there was a tear... which was a big deal because treatment would be entirely different depending on whether or not my water was partially broken.

She explained that the sac might reseal, but that I'd have to watch very, very carefully for any fluid leaking at all.

When the contractions had stopped for an hour I was sent home, with orders to drink as much water as I could and to stay in bed.

I tried to sit propped on some pillows while Sadie opened her presents, but quickly realized that being flat on my back was pretty much the only option left to me.

For the rest of Saturday and almost all of Sunday I stayed in bed.  I managed to sit up for around an hour, propped on pillows, twice on Sunday while cuddling with the boys, but anything else caused the contractions to come roaring back, and after sitting up I was exhausted.  Still by Sunday evening I could actually sit up and eat dinner.

On Monday I tentatively got out of bed.  We had accidentally double booked appointments and I there was one that I really couldn't miss for James and Patch if it was at all possible.  I sat up and was... fine...  I rested as much as possible and while the contractions briefly came back after Maggie's speech session, they went away when I laid down again and I was okay to take Sadie to ballet while Paul fed the little kids dinner.

This morning we're back to the little constant Braxton Hicks contractions that mark the second and third trimester in any pregnancy for me.  I'm less nervous than I was yesterday and far less nervous than I was on Sunday, and am making every effort to take it easy (Paul has been a huge, huge help both playing with the kids all day and being up with James for much of the night).

I do wonder if there was a tear that resealed itself, and I'm praying that this little one stays put for two more hopefully drama free months.

Now to go drink as much water as I possibly can to hopefully prevent any more contractions from having an excuse to start!

Sunday, May 1, 2016

Sadie's First Communion

The day Sadie had been waiting for for so very long finally arrived.  

After years of dressing up and pretending and hoping a priest would mistake her three year old self for a seven year old:

It was finally time:

The siblings were somewhat less excited.  Especially Patch who informed Sadie, when she told him that today was her first communion, that it wasn't, that they were going to see her in a ballet instead.  Then he tried to convince me that he was "ready for Jesus!" by telling me that he was a half dozen times.

Perhaps the biggest surprise of the day was Maggie.  She walked into the church and slide into our pew.  For the hour before the Mass started, while pictures were being taken, she sat almost still and was totally silent, and looked at her book.  I had a bit more wrangling to do once Mass started, because she became much more excited, but she still only made a few small happy sounds over the course of the Mass and didn't have to be taken out once.

Patch and James on the other hand were in fine form before Mass even started.  James was the first one to have to go out in the vestibule, because he was back-arching-screaming-furious that I would not let him attempt to lay siege to the altar.  Patch followed Sadie around for a while and then decided that he need to touch one of the candles that was lit around the perimeter of the church and he joined his brother and dad in watching through the glass doors.  

The Mass was beautiful!  Sadie was glowing when she came back to her seat!

After Mass we went over to the parish hall for the reception and I snapped this photo of James destroying a cupcake.  

After Mass we gave Sadie the option of doing whatever she wanted to do.  Her choice?  Steak tacos at Chipotle.

After that she asked if we could drive down and look at the house that's about half an hour from where we now live, that we'll be closing on next month (I know!  I know!  This deserves it's own post!).

As we were driving though things got a little dramatic and I ended up being rushed back to labor and delivery per doctor's orders after I suddenly started having contractions that were exactly two minutes apart, for more than an hour. And they hurt (this also deserves its own post!)!  

I'm home now, although things seem to be starting back up every time I sit or stand, or don't lay perfectly still on my back... so I'm not sure how this is going to work out.  I was really hoping that it was from overdoing and that after a night of laying down and drinking a ton of water I'd be okay to go back to every day life.  But at this point I'm a little nervous.

I even missed decorating the cupcakes and cake that I spent Friday baking!  Paul took over while I was at the hospital though, and the kids had more cupcakes after dropping me off.  

And that was our big first communion day! I'm so happy for Sadie!  She's waited so long for this!