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.”

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Going, Going, GONE!

Yep, it’s officially gone.  That slamming sound you just heard was my sanity, or what was left of it.  The past month has been a mixed bag of extreme highs and lows.  Just when we thought A seemed to be going up, something would knock her down…like food poisoning.

Wait, what’s that?  How does a child who barely eats anything wind up with food poisoning?  What could possibly be the cause?

Since you asked, it appears that it was mandarin oranges.  While eating out with a friend, A ate some mandarin oranges from the restaurant and a couple hours later was very sick.  But wait, how did we narrow it down to the oranges?  Easy, she refuses to touch them now.  Of the three, yes 3, things she ate that night, that’s the only one she hasn’t touched since.  Process of elimination?  Yes, please!

On a major downside though, we learned the beginning of this week that A has not gained weight in the past 4 months, in fact, she has lost some.  While for some of us that would be cause for celebration, for A it is not so great. (Have I mentioned I am a master of understatement?)

It may not seem like much but that combined with her growth rate dropping has her pediatrician and the rest of us a bit (there I go again – understating things) concerned.

Right now it would be so easy for people to point fingers and blame us as parents.  “Why didn’t you just make her eat?”  “Stop catering to your child and she’ll get better.”  “She’s just spoiled.”

Kind of makes you want to slap someone silly, doesn’t it?

Thankfully, no one has said anything like that to us, but we tend not to share too much with those outside our family and close friends (said the lady with the blog…).

Needless to say, in addition to the therapy that A already has, we are now adding back a few more.  We are revisiting our old friends feeding and occupational therapy and adding in a new friend, the dietician.  Sounds exciting right?  I know I have said this before but we are so blessed and lucky to live in a city that has an amazing children’s hospital that has a wonderful, no beyond wonderful outpatient therapy program.  The folks that work  there are some of the most wonderful (I need a to find a thesaurus and get a new adjective), kind, and helpful people you could ever hope to come in contact with when dealing with a child with special needs.  In all honesty, they make everything, from scheduling to paperwork, seem rather effortless and the therapists are just simply fantastic.

But enough of my rambling.  It’s a bad habit I have when I want to avoid, or at least try to avoid, things.  Ranks right up there with cleaning and other strange coping mechanisms I have developed over the years.

The worst part of all of this for me personally is that I thought I was finally coming to acceptance with A’s sensory integration issues.  I thought she was making progress and I was excited for her check-up because I expected to see some weight gain.  She has made amazing progress this past year and has fought for every little bit she has gained and we have all been there pulling for her.  Right now though, this almost feels like being pushed back to square one and I don’t like it.  It feels like someone knocked me down, took the wind out of my sails, hit me upside the head, insert the metaphor of your choice here.

I read once that coming to grips with having a child with special needs is like going through the grief cycle.  You start with denial and go through the anger, sadness, more anger, guilt, more sadness, maybe a bit more anger mixed with guilt mixed with sadness, and then you finally hit acceptance.  Right now I feel like I’m back at the anger/guilt/sadness stage.  I keep wondering if I could have done more, if I did enough.  Even when I know I’ve been doing all that I could and then some, it still hurts.

I look at my beautiful (yes, I’m prejudiced) little girl and I see a smart, sweet, happy little girl who is having to struggle to keep up because she can’t get enough calories in to support muscle growth.  Or who struggles with speech because the motor planning skill is rather elusive for her.  Or who wants so badly to follow her brother down the slide at the playground but she is terrified to go alone because she struggles to hold herself upright while sliding and the motion completely knocks her balance for a loop unless someone is holding her when she slides.  And that is if she can manage the steps to get to the slide.  But even with all that, she is still just so happy and so loving, especially towards her brother whether he likes it or not!

Deep down, in a small, dark corner somewhere I know that she will be okay and that as hard as it seems right now, she will get better.  All the same, I don’t think I’m ready to go back to acceptance just yet.  I’m still too angry that she has to struggle like this, I think the good Lord understands so it’s okay.

In the mean time, we’ll just crack open some more Pediasure, find something to toast (just ’cause the kids love to toast), and keep having as much fun as we can.  After all, if you can’t laugh in adversity, what’s the point?

 

Indy Cars and Spring Break Lessons…

Sounds like an interesting time, doesn’t it?  Sadly, a lack of internet and Spring Break, but mostly the lack of internet,  got in the way of my posting.  But, I’m Back!  Thank you!  Thank you!  I’ll be here all week and then some!

Okay, now that we have that out of the way…

The past couple of weeks have been a learning experience for all of us.  With my son’s Spring Break falling the week before Easter I decided that it would be a good time to find out just how much stimulation A could stand before she went into meltdown mode.  Sound like fun?  Well, sarcasm aside, it actually was a lot of fun.

We started the “stimulation overload test” (not very original, I know – I’ll work on it for round 2) with a day at the IZOD Indy Grand Prix.  It’s something we take G (our son) to every year (thank you Dad for the tickets!) and I decided to take A this year.  Amazingly, it went very well.  A loved seeing the Indy cars, waved to a few drivers, and got to spend time with some family and friends.  Granted, she barely ate while we were there, but I figure that eating four (yes, 4) yogurts and drinking a Pediasure over the course of the 6 hours we were there is a marked improvement over past excursions.  The best part of all?  Both kids were so tired by the time we got home that bed time was a breeze!

We followed this adventure up with visits with grandparents (both sets), a trip to Busch Gardens, and swimming at a friend’s house.  Things were going pretty well at this point.  She hadn’t had a melt down, was eating her usual foods pretty well and even ventured to try out a french fry.  She didn’t make it past the first bite, but she tried it so I was happy (G wasn’t, but since she had stolen one of his fries can you blame him?).  Then we hit the Spring Break halfway point, and boy, did she ever hit it.  To say she had a melt down would be grossly understating things (and gross pretty much described her place after most meals…after she upended the dish of food she refused to eat).

After about 3 days of doing….wait, what did we do?  Oh right, NOTHING!  I really could not expose the public to my child at this point.  It would have been considered cruel and unusual punishment, for the rest of the world, had I taken her out somewhere.  The poor baby could barely tolerate her brother saying good morning to her without covering her ears and crying.  At least G understands what’s going on and doesn’t take it too personally when A does that, otherwise she would give him a complex with the number of times she has cried when he looks at her or talks to her.  Although, the one thing she did seem to tolerate well was music.  Specifically, Celtic Thunder.  Anything else seemed to set her off, but Celtic Thunder has a calming effect on her, except for the times when she was dancing to their music.  It worked like mini therapy for her little neurons.

For those who haven’t heard of Celtic Thunder, they are a group of 5 guys from Ireland (and Scotland) who perform a mix of traditional Irish/Celtic music and some more contemporary pieces as well.  They are fun to listen to and watch (if you want more go to www.celticthunder.ie).  No, I’m not affiliated with them in any way, my kids and I just happen to like their music, and the affect it has on my sanity.  Moving on…

Suffice it to say, we made it through the rest of the week (barely) and by the end of the weekend A was back to her old self.  I don’t know if the rest of us have recovered yet or not…Stay tuned for further adventures!

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