Being Thankful Everyday

Yes, I know, not a very original title.  I’m sure we’ve all heard it a “bazillion times” (to quote my son) and are tired of it.  But coming up on Thanksgiving tomorrow, I realized that I no longer reserve my “what I’m thankful for this year” reflection to one day.  Every day I find at least one thing I’m thankful for, no matter how small.  Sitting here this evening, putzing around on Facebook, I realized just how big those daily small things really are.

This year, I am beyond thankful for A’s progress so far.  We have struggled to get her weight up and managed to succeed. Yay! No G-tube needed!  We have fought to get her muscle mass built up, and are making amazing progress. Plus, all those trips to the playground and chasing after her on her tricycle are great for Mama too!  I never knew you could run a mile without leaving your own block!  Amazing.

A is talking in small sentences (2 to 3 words) more often than not, she is engaged in the world around her (most days), and is just an absolutely amazing little girl.  Yes, that is my parental bias speaking, but I’m sticking by it!

G is an amazing big brother and little boy.  I won’t be able to call him that much longer as he turns 7 next month and is quite insistent that he is a “big kid, not a little boy!”  Despite all, he is caring, patient, and kind to his sister.  He helps her when she struggles and is endlessly patient (for an almost 7 year old) when she falls apart and lashes out at him.  Now, I’m not saying they don’t fight.  Believe me they argue and antagonize each other on a daily basis, but there is not a deliberate maliciousness to it.  It’s more of a I-want-to-see-how-far-I-can-push-this sort of thing and they resolve it fairly quickly and usually without needing me to step in (thank goodness!).

Tomorrow, while we’re all enjoying our Thanksgiving PB&J, yogurt, graham crackers, and Pediasure….wait, sorry, that’s A’s menu.  While we’re all enjoying our Thanksgiving turkey, stuffing, cranberry sauce, assorted veggies, rolls, and pies, let’s take a minute to remember those out there that may have a harder time finding a small moment each day to be thankful for with their children with special needs.  Maybe the one’s whose progress can’t be measured yet, or who have just received a diagnosis and have no idea what their future holds or it they will be able to make it through each day.  Let’s remember that while some of us may be lucky enough to have coverage for therapies, be it Medicaid, Medicare, or private insurance, not everyone has that luxury.  Some families are left with no resources and no idea where to turn or what to do.  Let’s take a moment to remember those families too.  After all, we can’t always see the heartache and struggles people go through until we take a moment to look a little closer and open our hearts a little wider.

I hope this Thanksgiving Thursday, whether you live in the US and celebrate it or not, you find at least one reason to be thankful for what you do have and not what you wish you had.

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Celtic Thunder, Separation Anxiety, and Pasta

Yes, believe it or not, they are all connected.  In a weird, roundabout, only-in-my-universe-could-this-happen kind of way.

Last Saturday (November 3) I had the pleasure of seeing Celtic Thunder in concert.  Now, this is the sort of show you could bring children to, but not if that child happens to be A.  The first time I saw this group perform, G came with us.  He was almost 5 and these guys were and still are his idols.

Excuse me for a moment while I wipe away a tear of pride…

Okay, moving on.  Bringing him was a no brainer.  G has always been a bright, well-behaved, sweet kid who has endless patience (thank God for that), so we knew he would be able to make it through the show.  Actually, he had so much fun dancing to the music that the people around us paid more attention to him at times than the guys on the stage (and if you know about Celtic Thunder, that’s saying something!).

But I digress.  This go around, it was decided that this would be a grown-ups only outing.  Myself (obviously), my husband, and two of our best friends who are basically family.  We went to the matinee so that I wouldn’t have to rush A’s bedtime routine, which is always a catastrophic failure.  My parents (who I cannot thank enough) agreed to watch the kiddos for the day so we could have lunch then go to the show.  Sounds like a win-win right?

Well…it would have been except for one minor detail.   A was having a horrible day and I had to implement what I call the “5 foot radius rule.”  Basically, it means don’t get too close to A or she might hit, bite, punch, or otherwise attempt to injure you.  I know, it sounds horrible, but on the days when she can’t cope she lashes out.  Let’s face it, she is a communication-challenged 2 year old, what other reaction could you expect?

Still, we got through the morning, she seemed to settle so off to Omi and Poppy’s house we went.  She settled just fine, so off we went to enjoy our show.  And yes, we enjoyed it immensely and even had the pleasure of meeting several of the guys along with the creator/producer of Celtic Thunder afterward.  All in all, a wonderful “Mommy’s Day Off.”

Over the next couple of days, I noticed A was quite reluctant to let me out of her sight and even more reluctant to eat.  Wait, I may have understated that a wee bit.  It was more of a cry-hysterically-because-Mommy-left-the-room and refuse-to-eat-solids-especially-around-anyone-but-Mommy sort of thing.

On top of this, we throw feeding therapy into the mix.  Now, this is not a new thing for A.  She has been in feeding therapy for about 2 months  now and this is our second go with it (her first was at 13 months).  No surprises here.  We are starting to work with A on tolerating foods she has textural aversions to (sounds like fun doesn’t it?) and I thought pasta would be a good start.  Let’s face it, it’s cheap, higher calorie, and it’s really easy to hide veggies in the sauce.  What could be better?

Apparently, anything but pasta.  Let’s just say it’s not going so well.  I thought we were making some progress since she seemed to be tolerating utensil contact with it during therapy.  Too bad, no matter what I tried, it didn’t carry over to home meal times.  Since Wednesday, I have spent more time cleaning pasta off the table, chair, floor, sliding doors, cabinet, and anything else that was within about 3 feet of A’s chair.  And it’s not like she had a plateful to toss around!  We’re talking about 4 to 6 pieces of macaroni!  That’s talent.  On the upside, my dining room floor (thank goodness it’s a small area) was really clean by Saturday night!

How am I handling all this?  Well, after I stopped banging my head against the wall, I realized that A will adjust back and she just needs time and space.  LOTS of space.  She also needed some “Mommy time.”  So I took her to the Clearwater Marine Aquarium (I love having freebies to amazing places!) since marine life relaxes her.  Plus, she loves the movie Dolphin Tale so any chance to see Winter is “awhum” (“awesome” to the rest of us) in her book.

The upshot of all this is that I have learned some important lessons.  The main one being do not, under any circumstances, introduce (or attempt to introduce) any form of pasta to A when she is struggling with bad days.  The secondary lesson is that “Mommy’s Day Off” will trigger separation anxiety in A that will leave me absolutely exhausted afterwards but it’s absolutely worth it!  After all, no matter how hard it is to remember this sometimes, I have to remember to take care of myself too.

 

 

Hi! Remember Me?

It’s okay if you don’t, most days I’m lucky to remember my own name!  It’s been a while since my last post.

How long?  Well, ah, let’s see…

Look, I can barely remember what I ate for breakfast so let’s just leave it at it’s been a while, okay?

My lack of presence is sadly due to my not-so-nice-friend exhaustion.  I have all sorts of great things I’ve wanted to put down on paper (or computer screen if you want to get technical) but by the time I’ve gotten my kiddos off to bed, I’m right behind them.  Don’t laugh.  You try sitting down to enjoy a movie with your husband only to see the DVD menu followed by the end credits.  He’s seen lots of great movies. I, on the other hand, have seen lots of production credits.

The good news is that no animals were harmed in the making of any film.

Moving on…

What has kept me away?  Why so exhausted?

Hmm…where to start…Ah, yes!  Let’s start at the beginning!

Since August, I have battled my local school district to keep G in the same school he has been in for the past 3 years (and won), rearranged A’s therapy schedule at least 3 times (not by choice), and added all kinds of new tasks to the chore of feeding her (bring on the supplements).  All of this combined has sucked the energy out of me more effectively than a supermassive black hole.

Yes, feeding is a chore.  Since we last visited, A’s eating preferences have gone downhill and taken her weight with it.  We have finally been able to start feeding therapy, but it has been very slow going.  After a month, A is starting to come around and tolerate her therapist working with her directly instead of through me.  Insert sigh of relief here.  Unfortunately, trying to keep her in a seat she will tolerate, distract her enough that she will not run off, and get her to eat at the same time is something of a Herculean task (and I doubt whether Hercules himself could have managed it).

I am in the process of attempting to locate a specific type of booster seat that I know A will tolerate (she uses it in speech and feeding therapy) and it has a belt to keep her in place.  Thankfully, it is actually quite cheap, unfortunately, everyone with in a 50 mile radius of me is out of stock.  Why don’t I just order it online?  Well, I have a hard time justifying paying a shipping cost that is almost half the price of the item.  To that end, I will be going to the store to have them order it so I don’t have to pay the shipping!  I am hoping that if I have the same booster she uses in therapy she might eat a bit better.  Of course, that doesn’t help the root problem, her sensory issues.

Her nutritionist has become very concerned with A’s lack of weight gain.  Even with 2 Pediasure 1.5s a day, A actually lost weight last month.  She grew half an inch, but her weight did not keep up.  I know that may not seem like a big deal, but it put A below the third percentile for both weight and BMI (body-mass index) for her age.  While her increase in height means she is getting calories, the drop in weight means it was not enough calories to maintain her system.  If it continues, her metabolism will slow to the point where she will not feel hungry, will not eat, and her system will start to shut down.  Her nutritionist added Duo-Cal in addition to whole milk and her Pediasure 1.5, but if she does not seem to be responding to this, we are looking at the possibility of a G-tube (feeding tube).

This is not an easy thing to hear.  Bad news about your child’s health is never easy, but this hurt.  It is like a physical, knock the wind out of you blow.  You sit there thinking, “My God. What else can I do?  What haven’t I done?  What did I do wrong? What am I doing wrong?”

The answer to those last two questions in our case is, nothing.  We have done and are doing everything we can to help A.  We have her in feeding therapy to address her textural aversions with food and her problems chewing and swallowing harder, non-dissolvable  food items (i.e. – peanuts and the like).  We have her in OT to address her sensory issues.  I work with her at home, constantly.  Once a month we see a nutritionist to monitor her BMI and growth and to make sure we explore every available avenue to increase her caloric intake in a safe and healthy manner.

Everyone A sees for her SPD has reassured me that we are doing all the right things and that this isn’t as bad as it seems right now.  I am trying, somewhat unsuccessfully, to see the forest instead of just the one tree, but it’s not working.  All I can think, when I slow down  long enough, is that they may have to put a tube in her which means surgery.  My 2 year old little girl who can barely tolerate her clothing and sounds most days is going to have to go through this and it’s not fair! (And yes, I did just mentally stomp my foot like a small child.)

I know that everyday there are people in the world who receive worse news than this, and that I’m lucky that A is as healthy as she is right now.  Logically, I am aware of these facts.  However, my ancestry is heavily littered with Scottish and Irish, not exactly a group known for being cool, logical, or level-headed (especially not all at once).  Now, just to clarify, I don’t fly off the handle in a hysterical fit with bad news.  I just have a hard time reconciling my more logical noggin with my rather stronger emotional heart. Especially when I haven’t been able to fully wrap my head around the situation.

I am hoping and praying for the best, but I have prepared myself for otherwise.  In the meantime, I am doing my best to take it one day at a time, or one hour at a time, depending on the day.

Happiness is….

So, honestly, how many of you started singing the song from You’re a Good Man, Charlie Brown?

I had to ask since I’ve been singing it off and on all day.  It’s a cute song and good when you need a quick reminder that small things can bring the most happiness.  But that’s not really where I was going with this particular post.

We have been following the Olympics fairly regularly, except my husband that is.  It’s been a great learning experience in sportsmanship for G and A has been attempting to increase her vocabulary while watching with us.  It has been absolutely wonderful and amazing to hear sounds that she has struggled to connect come together.  Even though she doesn’t fully understand why Mommy is so happy, she is excited because Mommy understood what she was trying to communicate.

The big bonus to this upswing in communication is that potty training has started moving along quite nicely.  She is able to spend most of the day, when we are home, in cloth training pants instead of pull-ups, which my wallet greatly appreciates.  When we are out, A has started letting me know when she needs to go and that is a major step forward from where we were just a few months ago.

We’re still struggling with the eating issues, but I’m still hoping that once we get into therapy things will start heading back in the manageable direction.  Until then, I have added in smoothies as a regular part of A’s diet.  While it may not seem like much, one smoothie snack a day, it does seem to be having a positive effect.  In the two weeks since starting this “smoothie experiment” we have noticed an increase in A’s endurance and she feels heavier to me.  I’m hoping this means she has actually gained some weight and will now be able to build and keep some muscle on her tiny little frame.  I think that has been the hardest part of all of this.  Knowing that A was struggling to build up her muscles (especially in her legs) but that her body was not able to maintain it because of the lack of calories coming in.

Her nutritionist had recommended milkshakes (homemade) but I really wanted something a bit healthier.  Hence the smoothies.  Thankfully they are not hard to make.  The hard part though is finding yogurt that isn’t fat free.  So far, our best bets have been the Cabot Greek style yogurt and Liberte Yogurt (Mediterranean style).  Both are higher calorie and thicker than regular yogurt so they make great smoothies.  As far as add ins, we had been staying fairly basic: bananas, strawberries, blueberries, and I just added peaches this week.  All of these went over well so I decided to get a little adventurous and try something new today.  I added Cheerios.

Okay, stop laughing.

No, really.  You can stop now.

This is a big deal when it comes to A.   For all I knew, I would be cleaning smoothie off various surfaces in the kitchen about two seconds after handing her the cup.  She has a tendency to toss food she doesn’t like, which is something we are still working on.

Thankfully, she and G both loved it.  So the banana, peach, blueberry, Cheerio smoothie is officially in the smoothie rotation.  In fact, it went over so well, that I’m thinking about being even more daring and trying a new fruit.

So, all in all it’s been a pretty good week.  We survived with minimal tantrums, increased success with potty training, increased communication, and increased caloric intake thanks to the daily smoothie break.

Yeah, the Peanuts gang got it right; “For happiness is anyone and anything at all that’s loved by you.”