Wednesday, January 28, 2015

All I'm saying is it kinda sucks...

I know why parents of kids with special needs tend to dread IEP meetings.  Today wasn't our first one.  We sat down with a similar group of people last year around this time to write her IEP goals and before that she had yearly evaluations in Early Intervention those went pretty much the same.

Here’s why IEP meetings tend to suck.  As a parent, one of the hardest things to hear, besides bad news about their physical health, is that they aren’t performing at the same level as their peers; typical or otherwise.  

This morning was Tera’s first annual IEP review meeting.  She has almost completed one year (minus the summer) of Early Childhood.  On the plus side, Tera has an amazing team of people that work with her and that we are in pretty regular contact with.  In this past year, we feel that Tera has made some pretty great strides in her vocabulary and also with her fine motor skills and gross motor skills.  She really only has one PT goal at this point and that is to be able to navigate stairs, curbs, and other steps without assistance.  She can do it, but as her PT pointed out, much of her struggle is due to her short stature and her inability to get her legs up as high as she might need to.  But anyone who has seen Tera move knows there isn’t much that slows her down.  

She met her OT goal of being able to draw horizontal and vertical lines and also circles.  She holds a writing utensil the correct way most of the time, and can write the “T” and “E” in her name.  Next up will be diagonal lines, letters with curves in them, and being able to complete three step skills (cut, glue, stick) with minimal cues and also while keeping her hands to herself.  They will also work on getting her to write the first letter of her last name after her first name, which works out well since she is a master of the letter “T”.

Then there are the other goals.  We received a copy of her goals for this past year in her backpack yesterday.  As a result of our every evening activity and also with Zoey being sick, I didn’t look it over until this morning before our meeting.  I’m glad I didn’t.  At the bottom of more pages than I expected, were the words, “goal not met”.  I won’t lie, that stung a little.  I didn’t think she was necessarily going to blow through all of her goals with no setbacks (although it would have been a pleasant surprise), but I didn’t expect that painful phrase to appear as many times as it did.  She is still struggling with consistently counting from 1-5 and higher than 5.  She’s also inconsistent in her ability to name colors and shapes.  

There are several other goals; some she met some she didn’t.  But the part that I really wasn’t expecting, and that was the hardest to hear, is that she showed regression in some areas and therefore qualifies for their summer school program.  We don’t have to do it, but at this point I’m not sure why we wouldn’t if she needs it.  So that means, to the best of my understanding right now, that it would be for five weeks, four hours a day and it would be either in Vernon Hills or Gages Lake.  Which also means she would probably be bussed.  Okay, so there’s something else I have to come to grips with.

They did do a great job explaining all of her strengths and I can tell that even with her behavior struggles, everyone that works with her is able to see what a true joy she can be.

Now mind you, we also decided to keep Zoey home today after yet another episode of throwing up at daycare due to her congestion.  So not only am I dealing with what I think is a fairly typically emotional time of having to hear what your child still can’t do, we’re also getting over three of us having the flu and strep and wondering what the next few days, and nights, will bring with Zoey.  

And so as my day progressed after the meeting this morning, I found myself more and more despondent over the situation.  And I don’t think I have to be sorry for that.  It sucks big time to hear that your kid isn’t doing what they hoped she’d be able to do a year ago.  It sucks to know that we may face many more of these types of meetings over the years.  And I could be optimistic and say maybe from here on out she’ll start meeting more of her goals and maybe she’ll even start to catch up a little to her peers.  But right now, I’m too tired to be optimistic.  Yes she’ll do the things she isn’t doing right now eventually, but for today, it makes me sad and I think I have the right to feel that way.  

Compounding the emotions is knowing that Zoey is also demonstrating some delays in her gross motor skills and so we’ve enlisted the help of Tera’s former PT.  While it’s great that we have the connections and knowledge that we do about developmental delays in babies, I really wish I could say I was more ignorant on the topic.  I could do without worrying about the fact that Zoey is actually further behind than Tera was at this point in her ability to hold her head up while on her tummy.  Or that, while Zoey did in fact roll over in her sleep at daycare on Monday, Tera was already doing it by now.  Am I losing sleep over it? Well, I’m losing sleep over Zoey’s current health dilemmas but not really her inability to tolerate tummy time.  But it is on my mind and conscious concern.  

It was stressful and exhausting enough to constantly be thinking about and working on both Tera’s health and development.  But now with two kids? It’s why I can never stop coloring my hair; I’m too afraid of what might be underneath.  So in the midst of the worry and the stress, I still have to be a mom and deal with it.  We nebulize both kids and watch for the symptoms we know to be problematic.  We work on the strategies we can with them to help them get through the current concerns.  We talk to the professionals that work with them and let them do their job to help our kids.  I think about them day and night constantly wondering if what we’re doing is enough even though I know we do our best.  And we muddle through the chaos, the worry, the stress, and the illness until calm times come again.  However short lived they may be.  Oh yeah, and I drink wine and vodka; not usually together though...

I'm not looking for pity. I truly am not. These are the risks you take when you decide to have children. Some people get lucky and some people not so much. I still consider us very lucky; challenged but lucky. But lucky as we are, there are days when the challenges are a bit harder to handle, especially when they come all at one time. So we'll continue playing doctor, teacher, and therapist at home and see where the hell we all go from here.

Wednesday, January 14, 2015

Zoey is 6 months old!!

We’re now back in the swing of things both at home and at work.   At home we’re back into regular bedtimes, evenings full of preparing snacks, lunches, bottles, and clothes all for the next day.  Tom and I are back to our regular diet of healthy eating  and figuring out who’s going to the gym which day and who’s picking up the kids or driving to therapy or starting dinner.  Basically, our time has become a lot more valuable.  

And speaking of time...our baby girl is six months old today.  It’s a truly confusing concept to wrap my mind around.  Tom would probably tell me I’m being too sentimental, that it’s just a day, and in the grand scheme of her life, it’s not the most important anniversary.  But six months ago today, things got a whole lot crazier and we met, albeit through a plastic box, the little girl that would complete our family.  

I didn’t particularly expect to have another traumatic birth experience (although Tera’s birth was completely uncomplicated, the hour following her birth was a little rough) and I most certainly didn’t expect to be giving birth at just 28.5 weeks pregnant.  I didn’t expect that she would be critically ill in her first week, and I didn’t expect to bring home our baby nine weeks after she was born.  

I don’t embrace a lot of sayings, but we’ve come to adopt the motto: expect the unexpected, in the Theodore household.  In those early weeks, as we tried to wait patiently for Zoey to grow and learn how to do so many things that other babies are born knowing how to do, like breathe on her own and eat on her own, the idea of her at the six month mark was pretty hard to imagine.  And now, at the six month mark, it’s hard to believe all that she’s been through and all that she’s overcome.  
This is the hat Zoey was wearing the first time I held her at nine days old. I almost cried when I found it in one of her drawers because I couldn't believe that it had actually fit her at one point.  

Zoey is a fighter.   When she was about two or three days old, the neonatologist on duty came into my hospital room at about 5 am to tell Tom and I that Zoey’s left lung had collapsed for the second time.  They had had to reinsert the chest tube (leaving her with a second scar) and were able to reopen the lung.  He told us that she was resting comfortably and that our little girl was feisty, which to them was the best thing that a baby could be.  It was a word that more than one doctor used to describe her through those nine weeks.  At home, we’ve dubbed her “Feisty Pants” (if you’ve seen Frozen, you might recognize this) and it describes her perfectly.  While she is an incredibly easy baby, who has been known to sleep 20-22 hours a day (sorry to all you moms who have quite the opposite problem), when she is awake, she’s moving, talking, and kicking her little legs.  Her huge, beautiful eyes are often as wide open as they could possibly be taking in everything around her.  Her infectious smile, much like her big sister’s, lights up my whole life.  

At six months old, Zoey is 11 lbs 9 oz, which means she is almost four and a half times bigger than she was when she was born.  She is 24 inches long and it seems as though she may end up taking after her dad in her long, lean frame.  She is in mostly three month clothes, but her little legs are too long for three month one piece outfits, so in those she is swimming a little in six month ones.  

She is a very happy, smiley, sleepy girl.  She’s very vocal, looks like she may be close to rolling over from her back to her tummy, but HATES tummy time! You would think we were actually torturing her.  As a result, she makes little to no effort (at least at home, just like Tera, she sometimes likes to show off at daycare) to lift her head while lying on her tummy.  It’s as if she’s doing it out of spite to show us how much she truly despises having to be in that position.  On the plus side, she has decent neck and trunk control while we’re holding her.  Our experience as parents of a child with special needs reminds us that she will get there, but it also reminds us of the activities and interventions we may need to do to help her get there.  She’s also batting at toys above her and adores looking at and playing with her hands, which is adorable of course.  Do I sound like a proud mom? I hope so because both these girls completely and utterly amaze me with their ability to defy odds and fight for everything they do.  

Unfortunately I wish we could say that we were able to celebrate this special day a little more, but Tera decided to spend Zoey’s anniversary getting sick so we’re back on Tera sick watch.  And now I need to get some rest since we never know for sure how these nights will go.  Happy Half Birthday to my sweet little Feisty Pants!

Friday, January 2, 2015

Happy New Year!

So my last attempt to write a post took over three weeks and I never ended up finishing it. But I’m determined today.  

Here we are in a new year.  I don’t even know what to say about this past year.  There have been many times when I would have said it was arguably one of the worst years I’ve had.  But I can’t even begin to think of any year that brought our sweet Zoey into the world as the worst.  We’ll say it was a challenging year.  It challenged my belief in myself that I was a good mom, shook my belief that I could handle one more challenge without seriously losing my shit, challenged the idea that I was a good person if for no other reason that I wasn’t given the opportunity to have a non-traumatic childbirth experience. During certain times I think that yes, we had some rough times, but we came through all right.  At other times I couldn’t help but wonder who we pissed off to earn what we’ve been given.  I have cried a lot of tears, felt a lot of self-pity, felt some guilt at the self-pity when comparing our situation to other people’s, felt a lot of jealousy when comparing our situation to other people’s, and experienced more love and amazement than I ever thought possible.

I read through one of my posts from two years ago on New Year’s Day and for Tera’s first two years I wrote about what she had accomplished in the past year and also what that year had brought us and what my hopes were for the next year.  When I wrote my post last year, I had no idea what 2014 would bring.  That’s the really crazy and kind of scary thing about the beginning of a new year.  Last year at this time I had just started recovering from my miscarriage and while we planned to try again, we obviously didn’t know for sure what would happen.  As it turned out it didn’t take long and by the end of January we knew I was pregnant.  But on the date of that post, there was no indication of what was to come.  I had no idea I would get pregnant again rather quickly, or that I would burst into tears at the sight of the positive sign for fear of experiencing what we just had started to recover from.  And the pregnancy proceeded with all its bumps along the way; multiple episodes of spotting and the recurring fear that we were losing another baby, the prenatal testing that resulted in my finding out I was a carrier for Spinal Muscular Atrophy, a disease that tends not to allow a very long life span.  The 20 week ultrasound that showed that while the baby looked fine and healthy, I had complete placenta previa that had a very low chance of resolving, a possibility of bed rest, no travel, and that I would  most likely have to deliver a minimum of four weeks early (ha!) and via c-section.  Bleeding at 27 weeks that led to my finding out my complete placenta previa had completely resolved but instead I had vasa previa.  And I think we all know what happened at 28 weeks…

But along the way, we experienced plenty of happy moments as well.  Tera started preschool last March in an Early Childhood program and has some really phenomenal people working with her and supporting her.  Over the summer she started hippotherapy (speech therapy on a pony) and loves it and also started the literacy program at Gigi’s (which she took a break from when Zoey came home, but should be starting up again soon).  Her language and vocabulary are exploding right now! Some of our current favorites are, “Oh, okay”  (with a twinge of Russian accent), “everybody” (pronounced errbody), and “Ewww, gross!”.  She absolutely loves her baby sister and regularly insists on holding and comforting her.  She’s finally started watching movies (although usually is still moving the whole time) and some of her favorites are Lion King, Despicable Me, Monsters Inc, and Frozen.  She also loves Doc McStuffins and Sofia the First on Disney Junior.  And drumroll please...she’s currently in the longest health streak of her life! In the next year I’m really hoping we can manage some of her less desirable behaviors a little better and that she continues to progress with her speech and communication.  We’re also hoping we might be able to transition her off thickening her liquids and getting her to drink from an open cup.    

And now I get to include our sweet Zoey too! At five and a half months actual and three months adjusted Zoey is our happy little baby.  She started sleeping through the night after her second stay in the hospital and is usually pretty content if she’s being held.  She smiles like crazy, has some super strong legs, and is not the biggest fan of tummy time at home.  She’s starting to lift her head a little bit so she’s a little behind there, but is very vocal.  I have no idea what the next year will hold for Zoey as far as development.  I know it’s hard to predict the pace at which she will develop and since we didn’t follow a typical schedule with Tera, I guess this shouldn’t be difficult for us.  But we both admit it would be nice if we could have at least some typical development with Zoey since we didn’t get to experience that with Tera.  I hope she can get through the next year without too many health issues and that she continues to be the amazingly sweet, easy little girl that she is.  Since she’s our last one, I’m really trying not to hope for things too soon.  I want to be able to enjoy and appreciate all her stages and I really don’t want her to get too big too fast (although at still less than eleven pounds, too big probably won’t be too much of a concern right away).  

And there’s our family.  I would love for us to be able to take one of the trips we had planned on taking last summer, like Door County or a water park.  I’m hoping we can finally get our screened-in room started and finished so we can enjoy a little more of next summer.  And I want us to be able to enjoy some stress-free time as a family and maybe, just maybe, Tom and I can also have some time away from our two beautiful, sweet girls too.  

I’ve never been big on resolutions.  Too many times they’re unrealistic or life gets in the way of the best intentions.  But there are things that I try to work on throughout the entire year that I will call life goals instead of resolutions.   I’d like to try and feel more comfortable with myself both physically and mentally and I’m hoping I can continue to make the changes I need to to make that happen.  I don’t want to lose sight of what’s important and I want to stay committed to having quality family time together.   

So there’s our year in summary and my hopes and dreams for 2015.  I hope everyone else has a healthy and enjoyable year as well and thank you as always for following along on our little adventure and for all the really encouraging comments along the way.  Happy New Year!