Sunday, April 27, 2014

Some good and some not quite as good things...

Do I share the good or the bad tonight? Since I never know what a week will bring and when I'll have time, I'll do both.  I always prefer the bad news first, to get it out of the way.  And this isn't really bad news anyway, that's a tad over-dramatic.

Tera seems to somewhat slowly and rather inconsistently be getting sick.  Her appetite is off, a cough has begun and it sounds nasty, and she's a little more tired and irritable than usual.  But only sometimes.  At school last week no one commented on anything out of the ordinary, except her appetite, and her cough was non-existent during the day.  But as I write this, I find myself cringing with every cough I hear as she sleeps upstairs.

Many people think I'm pessimistic when it comes to Tera's health.  I like to think based on her track record, I'm pretty realistic.  To some the fact that she hasn't been really sick this winter (except of course a sinus infection, strep throat, and an ear infection) means that she might be getting better.  I tend to think it just means it's inevitably going to happen again soon.  And this cough doesn't reassure me otherwise.  At this time last year she was just getting over having viral pneumonia; which was the worst of the five times she's had it.  Now she hasn't had it since November, which might be the longest streak she's had.  As we've been down this road many times before, we have different modes.  Right now we're in prevention mode; we keep an extra close eye on her symptoms, monitor her temperature, add the Albuterol back into her nebulizer, and hope for the best.  Only time will tell how long we stay in this mode, or transition to another.

Another fun little realization we're having is that Tera may very well be entering the terrible two's.  Now you may remember that she actually turned three at the end of February, but she also has that pesky extra chromosome that likes to mess with her development.  At her IEP meeting, they put her at around 18 to 24 months developmentally, which means she'd just be starting this fun little phase.  And of course, a developmental delay wouldn't be complete if it didn't last longer than phases in typical kids.  For now it seems to be more tantrums for little reason and they last longer.  We've decided just to let her spend that time in her room until she calms down.  And honestly, she seems to come out of there a little sweeter than when she went in.

And now for the good news.  I sent Tera's teacher an email last week to check on her progress.  Here's what she had to say.

Hi Mrs. Theodore,

Tera has been doing very well in school!  We love having her in class :)
She puts her best effort forth in all activities.  She especially enjoys
fine motor tasks like cutting paper, tracing over her name, and gluing
artwork together.  We are using fading hand-over-hand prompts during these
tasks.  We noticed that she has an increased attention span during our
circle time (large group time).  She is beginning to sit with the group
for the duration of the activity, with occasional reminders to wait her
turn.  During choice play time, Tera enjoys pretending to be the teacher
and loves to play in the kitchen area :)  She is now pretty familiar with
the classroom routine and daily schedule.  She knows where her cubby is,
hangs up her coat and unpacks her backpack.

We have noticed that lately she has been chewing on her sleeve and her
hand.  We give her objects to hold to distract her from chewing on her
hand/sleeve.  When we are standing in line, sometimes she will push if
other children get in her space, otherwise, we do not see any aggressive
behavior.  We do have sensory materials in the classroom as well
(trampoline, squish ball, squeeze machine) that the children have access
to if they need a sensory break.  It's great that you are implementing
these at home as well.

I wanted to also mention that Tera is sitting on the potty and trying,
however, her diaper is usually wet by the time we get to the bathroom.
Tera is signing for diaper and potty.  Her daycare mentioned that she is
using the potty.

Tera is signing and making word approximations more often at school as
well.  I'm glad that it's is carrying over at home :)

Needless to say, we're pretty proud of her and her progress in just a few months.

So there it is, the good and the not so good.  But we're hanging in for now...
 

Thursday, April 24, 2014

Dealing with sensory issues. Again...

I think one of the hardest parts of parenting, whether it's a typical child or a child with special needs, is trying to adapt to their ever-changing needs, behaviors, and personalities.  In our case, it can be difficult for us to tell which of Tera's behaviors and actions are related to her inability to communicate fully, her sensory issues, or just typical three year old behavior.

A few weeks ago Tera was going through a stint of waking up several times a night and also very early in the morning.  She would wake up anywhere from one to four times during the night and then again by around 4:30am some days.  Sometimes she would go right back to sleep, sometimes it would take us laying down with her for a while, and most times when she did go back to sleep, she would wake up again an hour or two later.  She goes through these patterns every couple months, but this time it was happening more frequently than past times. After ruling out any obvious health related issues, we decided that there was no good reason for her to be waking up and that we had to try and take care of this behavior now before we add a newborn, who is at least expected not to sleep well, into the mix. 

We had thought at first that her allergy medicine could be having an adverse effect on her so we stopped that first.  It made a difference one night, but after that she went right back to waking up.  So we decided that the next night that she woke up crying, we were just going to let her cry it out.  Now you may be wondering why we haven't done that before now, seeing as she is three, but the truth is most of the times we've gone through this in the past, there have been health related issues going on.  She's rarely been healthy enough for a long enough stretch for us to think something else wasn't the culprit.  We also know that her tonsils are rather large and that that can affect her quality of sleep.  

Anyway, the first night was rough.  She woke up about four times, and we just stayed in bed and let her cry.  She would start at her doorway (we have a gate up) and cry there for about ten minutes, and then eventually make her way back to bed, cry a little more, and eventually go back to sleep.  That first morning after was a little rough for her because she was pretty tired and we ended up having to wake her up to get her ready.  But each night after that got better and better and she started sleeping later also.  Last weekend we actually got her to sleep until after 6am, it was a dream! 

Around the same time, we started noticing more instances of Tera trying to hit us out of frustration.  She also has these instances when she gets very agitated and will bite her own hand or arm, sometimes pretty hard.  We had assumed that because she is now in preschool and daycare that she was getting more than enough stimulation, but with Tera and her constant motion, it's not just mental stimulation that she needs, she has definite sensory input issues.  We joke all the time about her constant motion, but in reality it really does affect her temperament sometimes.  She doesn't just move all time time because she's hyper, she does it because she needs the input and movement helps keep her calm.  

The night this finally occurred to me, I did a quick search on Pinterest for sensory input ideas and stumbled upon a mom's blog about her daughter that described Tera perfectly (here's the link ).  So Tom gathered up our resistance bands and 6lb medicine ball.  Thanks to Uncle Mike and Aunt Cathy she now has her own trampoline which has been a huge help, and we already have a weighted vest and blanket for her.  We decided that just like we need to make time for our own workouts, we were going to have to make a little time each night for Tera's exercises.  Each night we try and spend anywhere from ten to twenty minutes having her bounce on her trampoline, pull on the resistance bands as we run around the kitchen, roll and pick up the medicine ball, and we even tried swinging her in a sheet (she loved it, but then threw a tantrum when we wanted to stop).  

And the results? She hasn't slept this well or this long in quite some time.  We've had little to no hitting incidents, and she seems to be listening a little better.  We never really know for sure what is actually affecting her and what is a coincidence, but for now, there seems to be a correlation between the exercises and her sleep and behavior.

I will admit that it can be difficult to realize that every aspect of Tera has to be dealt with in special ways.  Counting works better for her therapists and teachers, but at home she almost always makes it to three and ends up in a timeout.  We have to remember that she has this sensory issue and that she isn't like other kids.  Her behaviors are often tied how she processes things and what she can understand and what she can communicate.  It's another one of those times I find myself experiencing some self-pity, but then I realize this is the way it is and we just have to deal with it the best we can.  She will always be a challenge, but Tom and I just have to gather up all the energy we can muster and figure her out!

Wednesday, April 9, 2014

Finally some truly good news!

So one of the parts that I left out of my last post was that as part of the prenatal testing, they did a genetic screening panel that tests to see whether I am a carrier of about 45 different genetic conditions.  When they called with the other results, the very low chances of Trisomies 13, 18, and 21 and that we are in fact looking at having yet another female in the house, they also told me that I am a carrier for a condition called Spinal Muscular Atrophy.

The one advantage to genetic conditions (I guess advantage is the best word), is that both parents have to be carriers in order for there even to be a possibility of a child getting it.  If both parents are carriers, then there is a 25% chance that a child won't get either copy and would be completely unaffected.  There is a 50% chance that a child would get a copy from either parent and just be a carrier, but unaffected themselves, and a 25% chance that they would be afflicted by the condition.

The way I deal with things is by trying to inform myself.  I remembered my doctor listing that as one of the main things they test for and also that it was fairly rare, but I wanted to see exactly what it was.  Well, when I looked it up, I was devastated by what I found.  It's not a condition that's easy to live with and individuals typically don't survive past childhood when born with certain types.

I really couldn't believe that we were facing yet another possibility of a child with special needs. And even worse, with such a short-lived prognosis.   So I made the calls to the family letting them know the results and once again feeling like we couldn't just share good news; it seems so frequently to be tainted with possible bad news.  But that's what I had to try to keep in mind: the word "possible".  This was only even going to be a possibility if Tom was a carrier.

So he scheduled his appointment and went in last Thursday to get tested.  The entire time I kept thinking, well you don't hear about this very much (at least I never had) so it couldn't possibly be that common, right? Well, as it turns out, 1 out of every 33 Caucasians is a carrier.  And then my heart sank again.  The math person in me immediately began calculating the probability of such an event; and that didn't reassure me either.  They told Tom that the results would be back in 7-10 days, but that we could call earlier if we got antsy.  Well I was antsy right away! I really wasn't sure how I was going to handle another week of waiting; I mean I knew I had to, but I wasn't sure how that was going to be possible without making myself absolutely crazy.

I thought about the possibility all the time and tried to come to grips with what it would mean to our child and our family if she was affected by it.  It never made me feel any better.  And then a few days ago, after panicking for a while, I just felt like everything was fine with our baby.  The only problem was I didn't know if it was my intuition, or just wishful thinking.  I decided that it didn't matter what the reason was, as long as it made me feel better and less anxious.

By the time Monday rolled around I thought it might still be just a little too early to call, but asked Tom if he would try calling on Tuesday.  As it turned out, it wasn't necessary.  A little after 2:00 I got one of the best messages I could have received: Tom isn't a carrier.  I just about burst into tears.  I had to listen to the message multiple times to make sure I had heard correctly, and each time it said the same great thing.

I was finally able to share some truly good news, with no caveats and I feel like a huge weight has been lifted and that I can finally breathe and relax again.  When I was pregnant with Tera, I came to find out I was not a person who loved being pregnant.  I had an easy pregnancy and I didn't hate it by any means, but it wasn't the most fun I've ever had.  So I won't say that I'm just going to enjoy the rest of my pregnancy, but I will finally relax a little and at the very least, enjoy that I can eat some things I wouldn't normally, with a whole lot less guilt than usual :)

Friday, April 4, 2014

Formally announcing the SEQUEL! Coming early October 2014...

Now that it's been officially announced on Facebook, the most official of all news outlets, I can make it public here; I'm pregnant!

It's been difficult not sharing the news here as so much of what I've experienced over the past month or two has been related to that.  It's part of the reason why I haven't been posting as much (well, that and I was too freaking tired to stay up much past Tera's bedtime for a while there).

I won't lie; the emotions that have come along with this have been completely overwhelming at times.  It was not unexpected by any means, we had been planning for a while on a "sequel", but planning something and actually having it happen can be two very different things.  I spent a lot of time before getting pregnant worrying about how we would handle having two kids, with at least one of them having special needs.  As the pregnancy has progressed, I've focused more on the health of this baby and found myself just hoping that everything is okay.

We knew after we had Tera that if I got pregnant again, we would do as much testing as we could to find out as much as we could.  I have said many, many times before here, that while I wouldn't change not knowing with Tera, neither one of us wants to go through another surprise at birth like that.  And unfortunately, except for an amniocentesis, there is no way to know anything for sure; and we don't want to do that.

The first round of testing was done two weeks ago (I'm 14 weeks now).  I went in for an ultrasound to try and detect any "soft markers" for DS and also a blood work up to test me for about 45 different genetic conditions that I could be a carrier of and also to test for Trisomy 13 (a third copy of the 13th chromosome), Trisomy 18 (a third copy of the 18th chromosome) and Trisomy 21 (DS), and Turner Syndrome.  One of the soft markers for DS is a less transparent nuchal fold which indicates fluid at the back of the baby's neck.  Fortunately the technician told me right away that everything looked normal on the ultrasound.  The blood work on the other hand, was going to take a week to two weeks, but as a result of the the blood test for the trisomies, we were also going to find out the gender.

I spent most of my spring break anxiously awaiting the call to tell me the results.  But it didn't come until Monday.  I of course missed the first call, had to call back, leave a message, and then wait for another call back.  Then I finally got the results.  The test for the trisomies came back as a very low risk (1/10000).  That doesn't mean they can't happen, just that the chances are low, but it's enough to give me some piece of mind.  And the gender result is... A GIRL!

While Tom and I were kind of hoping for a girl (really out of convenience sake because of all the clothes accumulated by Tera and my twin nieces), most of the people in our family were really kind of hoping for a boy, but as it's not something we really have any control over, we'll just love her as much as we love our current little stinker.  Tom and I both did admit after finding out that as much as another girl will save us money on clothes (for now at least), a boy would have been kind of nice too.  However, we are NOT planning on any more so it looks like girls it will be.

There are days I find myself wondering more than I ever did with Tera, if everything will be okay.  I didn't even know about, or think about at least, so many of the things that I've become more familiar with since Tera was born, outside of DS.  As we waited for the results, Tom and I both agreed that while having two kids with DS would be challenging, it wouldn't be as scary as it was when we had Tera and we didn't know nearly what we know now.  I try to limit these days the best I can, and fortunately my sweet Tera helps with that as she is an excellent distraction from most things.  Of course as a result of Tera and her boundless energy, we have both found ourselves asking each other, "Are we really doing this again?"  To which we both try to respond with, "well the second one can't be MORE difficult than the Tera is, can it?"

And speaking of Tera, she is VERY excited about the baby.  She was already obsessed with babies; she has them all over the house and absolutely adores her little cousins.  We weren't sure how much she would really understand, but as soon as we told her there was a baby in my tummy, she started patting it and giving it kisses.  Now we ask her regularly where mommy's baby is, and she gently (usually) puts her hand on my stomach and then tries to kiss it.  I have very few worries about Tera being jealous as I've seen her with babies and mostly she just wants to hold them and shower them with kisses.

Tomorrow Tera makes her second runway debut as a part of the Gigi's Playhouse Fashion Show, so I hope to have at the very least some pictures to share, but with Tera performing, you never know what else I might have to share as well...