Friday, June 28, 2013

Here Come the Hawks, The Mighty Blackhawks!

Today was a truly memorable day.  As many of you may have picked up, we are big hockey fans in the Theodore household.  Many of my maternity pictures featured us in Hawk gear, many of Tera's newborn pictures centered around hockey, her first birthday party was Blackhawk themed, and so you get the idea.  Blackhawk scrimmage game, I remember waiting in line to get Eddie Belfour's autograph, I remember knowing the names and numbers of the 1990's teams, I remember us having our own sticks and playing with my dad in our basement, I remember taking up figure skating because it wasn't really popular to be a girl who played hockey when I was a kid (and my mom would have killed me and my dad), and I remember developing my love for Bob Probert.  And then I remember meeting Tom, who also happened to play hockey; and how my dad pretty much approved of him on the spot as a result (oh yeah and he was really good to me too).
My dad played hockey and I remember as a kid crawling on my stomach in front of the TV when the Hawks were on so as not to block the view.  I remember sitting in the stands with my sisters watching him play, I remember going to the annual

And then I spent many a night as the only girlfriend in the freezing cold stands at 2am watching Tom play and then as the only wife in the stands every other Friday night watching Tom play.  I remember telling Tom it was probably a good idea that he get a sub for the weekend before I was due (which ended up being only hours before I had Tera and was the only game he missed that season).  I know that his hockey team has been a big supporter of Team Tera in the Gigi's 5K, and I know that one of the coolest things I've seen as a parent is my kid sitting IN the STANLEY CUP (also thanks to my dad).

This year we taught Tera to clap to the chant "Let's go Hawks, Let's go!".  And someday hopefully soon, she'll pick up her first stick and either try and score on her dad or learn from his years of experience how to master the blocker and glove hand saves.  We can't wait until they make skates her size so we can get her out on the ice and she will more than likely be dressed up like the Stay Puff marshmallow man like I was when my dad first taught me to skate.  So yes, hockey is big in our house.

And today Tom and I (yes we left Tera in the very capable hands of his parents and not with us) headed downtown at 5:45 in the morning to see our first Blackhawk's rally after winning the Stanley Cup this past Monday night.  We weren't able to go in 2010, but we just couldn't pass up the opportunity to go this time and I have to say it was pretty amazing.  Just to be in the presence of 2 million other fans made the city come alive with Blackhawk pride.  We have been fans through the years of not being able to see home games on TV, through the better years, the not so better years, and finally, the great years.  We have seen hockey dwindle in Chicago and then finally be allowed to grow into the amazing fan base that it is now.  I will admit, we tend to be a bit jaded towards those fair weather fans and those who didn't really know that hockey existed before Patrick Kane (our jerseys are proudly all before 2000), but it is still exciting to know that hockey is alive and well in Chicago once again.

And so now we have to catch up on all the shows we missed from this past season since we've pretty much only had hockey on since the playoffs started.  And it will give us something to do until the next season starts.  Here's to the Cup again in 2014!!!!!

Tuesday, June 25, 2013

An "off" day for Tera

It really sucks when your kid has an "off" day at school and you know you weren't there to help fix it.  Everyday when we pick Tera up we get what I call a report card that gives us a rundown of her day; diaper changes, how she ate, if they played outside, any projects they may have done, and any other pertinent information.  We also occasionally get incident reports which let us know about something she did that she wasn't supposed to.  In Tera's case this typically means biting or pulling hair, but lately, mostly biting.  It's one of the things that we're trying to work on but it's difficult for us because she doesn't really do it at home.  Most of the time her teachers explain to us the situation she was in when the incident took place and together we try and figure out what the trigger or problem may have been.  Many times, these incidents take place in a week or a day when she isn't feeling well which makes it harder because I know she's just uncomfortable and doesn't know how to communicate it appropriately or how to react to her feelings.

Today seemed to be one of those days because when I picked her up, though she was acting fine at the time, she'd had a rough day.  There were multiple attempts at biting, but today her teacher wasn't able to tell why. Her teacher in the afternoon however, told us that Tera seems to be sensitive to loud noises and tends to get aggravated by them which sometimes leads to inappropriate behavior.  In addition to this she was pulling on her ear today and also on her own hair.  She was definitely frustrated when she got home as well and both Tom and I noticed a definite difference in her behavior from the past few days, so something was definitely "off" with her.

Now here's where my frustration really grows.  Tera seems to be having several minor issues that come and go each day for the past few days.  Now even with my vast medical knowledge gained since her birth, I'm not sure what to make of all these symptoms.  Over the weekend she seemed to have very watery eyes, had a harder time controlling her liquids while drinking, and had several episodes of spitting up on Sunday afternoon.  Since then we've added more thickener, which seems to have helped, but now she's tugging at her ears and rubbing her eyes all the time.  I have to assume that allergies are playing at least a part in this, but I have no idea how much of a part and what else might be going on.  She has a follow up with the pulmonologist on Monday and one with the ENT in a couple weeks.  Hopefully between the two of them we can maybe find some kind of issue and/or remedy.  But now I'm also worried about her sensitivity to noises and how that may be affecting her behavior and what that might mean in regards to her health.

The good news is that she is officially being moved up to the next classroom next week which Tom and I, along with her therapists, believe will help with some of her behavior issues because she'll be more challenged, but also hopefully with her development because she'll be around more age-appropriate kids.

Tonight I ordered her a weighted vest of her very own so we don't have to keep remembering to bring it back and forth to school and also a weighted blanket to see if that might help when she's supposed to be sitting still.  In the meantime we'll keep bringing her back to her sensory tables (water, rice, and sand) to try and help give her input, we'll keep having her carry her now 5 lb bag of beans back and forth to give her a safe weight to carry (also for input), and tomorrow I attempt to make homemade flubber.  I swear my kid is like some kind of experiment, but if it works, I will do whatever weird things I have to to make sure she's happy.  I'll post on the success of the flubber in the next day or two :)

Thursday, June 20, 2013

My kickoff to summer!

I don't remember the last time I had such a long break between posts, maybe it just seems long, but I had good reasons I swear and it wasn't even because Tera was sick this time!

Since my last post Tera did not really end up sick, just bad allergies we think, I finished my tenth school year, we successfully raised over $8,500 for the Gigi's 5K Fun Run/1 mile walk, and Tom and I celebrated nine years of marriage, sixteen years of being together, and went on a much needed and very enjoyable trip to New Orleans.

It's pretty amazing what a vacation and less daily stress can do for your outlook on life and your mental health.  Tom and I were in desperate need not only for some relaxation but for some time for just the two of us.  Our daily life so regularly revolves around whatever the current illness happens to be, what medications Tera is getting and which ones need to be refilled in a given week, what we might have the energy to make for dinner, who's taking her to what doctor, who will be home for a therapy session, contacting the therapists and scheduling each month, and trying to figure out how to incorporate the latest batch of strategies to either help her progress or to stop a certain behavior.  I have such a renewed energy now that I've recharged and don't have to go back to work for three months.

After a rather stressful 24 hours of cancelled and rescheduled flights, we spent five days not worrying about who was getting up with our sweet girl at 6am, getting her thyroid, reflux medication, and her morning nebulizer in, not having to worry about planning our day around anybody's nap time but ours, eating late, staying out late, and sleeping late (well, later anyway).  We needed it, I loved it, but at the end, I was ready to be home and Tera's welcome was no disappointment, our baby missed us.  We also needed to be able to detox our bodies from the amazing but heavy food and drinks we had indulged in.

And now I start the rest of my summer.  Tera can walk this summer and I'm so looking forward to all the things we can do.  I'm going to have fun with my daughter and as much as I can I'm going to work on as as many strategies to get her where I know she can be.  If there's one thing I've realized in the past couple weeks, it's how I've underestimated what she can do and I don't want to do that.  Tera is smart.  She may be delayed in some areas, but she is smart.  She is picking up new skills and sounds daily and her receptive language is increasing even more quickly; I want to take advantage of that.

One of the things I'd like to do this summer is share some more of the strategies we use with Tera in hopes that other parents of kids with DS can use some of the ideas when appropriate.  Of course, many of the things that we do with Tera work with kids of all abilities and if it can make things easier for someone else, what a bonus!  And of course I'll be sharing Tera's successes, inevitable trials, and pictures which I just can't help.

I welcome you all to what will hopefully be my best summer with Tera yet :)  

Tuesday, June 4, 2013

I know, but...

I don't like writing negative posts, but I don't have a lot of time lately and unfortunately I seem to find more time for negative than positive ones as of late.  I'm really hoping that with only two and a half days left of school that I have time to write some more positive, and informative, and inspiring posts in the next few months.  But for now...

I hate that the sound of a cough can break my heart.  I hate that Tera can leave a doctor visit without anything being wrong "yet".  Yes that is what is going on today.  After the awful health crisis that lasted all of April, she managed to escape May with just a minor ear infection and the beginnings of another runny nose.  Welcome to June where she started on almost day one with a minor cough and rubbing her other (originally non-infected) ear on her shoulder on and off.  I only heard the cough maybe five times in the past two days, but I'm quite well versed in Tera and seeing as how almost every single cough she's had in her two year life has ended up as something, I don't feel I'm overreacting.  I sent a message to the ENT asking for suggestions based on her symptoms and history and so Tom ended up taking her in to see the pediatrician this afternoon where she left with a fairly clean bill of health.  So far.

Until recently we would have started her on the Albuterol right away, but since finding out in April that it aggravates her acid reflux, I'm more hesitant to use it now unless we really need to.  But I made the decision to do it before bedtime tonight and almost immediately she began coughing after I put her to bed.  And every cough made me want to cry.  I know she can handle the discomfort, but she shouldn't have to.  I know she's been through this before, but it's been too many times.  I know she's not really sick right now, but she tends to get more sick once this sets in.  I know that it could be worse, but right now all I can think about is that she's going to have to go through this again.  And to top it all off, I know that it will probably not be gone before Tom and I leave on vacation next Wednesday night and I'll have to try and deal with leaving her while she's not feeling well.  Oh yeah, and feeling like a shitty parent because I'm leaving my sick kid, but knowing that we need this vacation because we've spent the better part of the last year dealing with a sick kid.  I know she'll be left in the very capable hands of both our parents who between them have over 60 years of experience raising kids, but she'll still be sick and I won't be there.

I can hope that this is fairly minor and she only coughs a few more times and maybe it's just allergies and in a day or two she'll be completely fine.  I will try and hope for that.