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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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.”

One Small Hop for a Munchkin…

One giant party for Momma!  Yes, my two and a half year old daughter who could not jump, did so today.  It was a small hop but both feet left the floor and she didn’t fall on her little butt so it counts as a victory in my book.

On the downside, we’re still struggling with food.  I made the sweet potato pizza for A but she didn’t like it very much.  Okay, she didn’t really like it at all.  Given the nature of the dough, it stays rather soft and A didn’t like that.  G, on the other hand, did.  He thought it was really good but said that in needed veggies on top to give it a better flavor.  Oh well, at least one of my kiddos liked it.

After a weeks worth of extra visits for feeding and occupational therapy evaluations and a visit to the nutritionist, I have learned that we are on the right track.  Despite A’s limited tolerance for a variety of foods, we have still managed to give her a somewhat balanced diet.  Is it ideal? No, not really since she neglects whole food groups, but through liberal use of homemade fruit and veggie smoothies she is still getting what she needs.  All we have to do now is up her caloric intake.  Thankfully, it is doable if A cooperates.

Oh, wait, I’m asking for a two year old’s cooperation.  Nevermind.  This may be a bit of a challenge.  That’s okay.  It will just force me to be more creative.  Good exercise for my brain!

Well, I have been attempting to procrastinate again with this blog, but I am so tired after a long day of therapy (A’s, not mine people!) and more paperwork (that I still have to finish) that my spelling is becoming atrocious (thank you spell check for saving me) and my grammer isn’t to far behind.  So before I embarrass myself and anyone who ever taught me (especially my mother) I will leave you with the recipe for the sweet potato pizza if anyone wants to give it a go.

1 large or two small sweet potatoes  (app. 1½-2 cups prepared) peeled, cut into chunks
• 1½-2 cups flour (preferably whole wheat)
• 2 tsp baking powder
• generous measure of basil, oregano and thyme (or other seasoning to taste)
• app 4 Tbsp cold water mixed with 2 Tbsp virgin olive oil

  • Boil the sweet potato in a large pan of water for about 15 minutes until very soft. Drain well, return to the pan and mash with a potato masher until smooth. Set aside to cool.
  • Preheat the oven to 400F. Place sweet potato in a large bowl. Add the flour, baking powder and seasoning.
  • Stir in the water and oil mixture with a large spoon until the dough comes together it should be soft and spongy. Knead lightly to form into a large ball – adding a little extra flour if the mixture seems too sticky.
  • Divide the dough into two equal balls and roll out on a lightly floured board into two circles around 2cm thick. Lift carefully onto two lightly oiled baking sheets. Brush lightly with oil. Spread one of the pizzas with your choice of sauce and toppings.
  • Place both pizzas in the oven, with the topped pizza above the plain base. Bake the topped pizza for around 25 minutes until well risen and lightly browned. Cook the plain base for 15 minutes until golden and cooked then remove and allow to cool.
  • Once cool, top with sauce and choice of toppings, cover loosely in foil and freeze on the tray. The next day remove from tray and wrap tightly in foil. To cook, remove foil, place on a lightly oiled baking tray and bake from frozen in a preheated oven at 400F for 15-18 minutes until hot.

Enjoy!

Hey Look! More Paperwork!

Do I sound excited?  I should.  After all, who doesn’t love a good dose of paperwork to fill out in the evening?  The kids are asleep, it’s raining, there’s nothing better to do right?

No, wait.  I think I could find a game on Facebook to play, or maybe send my sister annoying messages on Skype, or maybe clean my bathroom again, just for fun.  Well, skip the bathroom – I think I would rather do the paperwork.

What paperwork?  Oh, sorry.  I’m easily distracted tonight (Peanut Gallery – HUSH!).  Just more patient and feeding history forms for A’s feeding evaluation on Tuesday.  I’ve been spoiled recently by not having to do these when she needs a new therapy since the office we go to has everything already in her chart.  Unfortunately, the ONE feeding therapist in the office moved to a new satellite office so we have to go to the main ACH campus for feeding therapy now.  That, lamentably, means I actually have to do the paperwork this time.

Feeding therapy?  What’s that?  Yeah, I had the same reaction the first time we went down this road.  I mean, how do you do therapy on eating?  It depends.  The first time we had feeding therapy, A had an oral-motor delay, meaning she didn’t chew properly.  Actually, she didn’t really chew in the traditional sense at all.  So, her therapist taught her how to chew.  It’s hard to explain exactly how that worked but it involved a lot of sticking a Nuk brush (for those that don’t know what that is – http://funandfunction.com/nuk-massage-brush-p-505.html ) in A’s mouth and getting her to “chase” it with her tongue. We also worked to “desensitize” her mouth so she would tolerate the texture of solid foods.

This time, it’s mostly about her sensory issues and seeing if in a therapeutic environment we can work more intensively on getting her to accept a wider variety of foods.  She also needs help with “feeling” where food is in her mouth.  Sometimes, A has no idea where her food is in her mouth or how much she has in there causing her to either gag or sit there with her mouth open and tongue out until I clean the offending item(s) out.  Not so much fun for either of us, to say the least.

All this and a visit to a dietician somewhere in there!  Yay paperwork!  Okay, not really.  I admit, I’m using this blog as a means of avoidance right now.  “I don’t want to do the paperwork, so I’ll write on my blog instead.”  Works for me!  I had to switch over after I got done hunting up recipes to try on A and her brother, but I did find some goodies.

There is the fairly common Kale Crunchies – toasted, seasoned kale leaves; and of course, sweet potato crisps, but the one I was after was the sweet potato pizza base. And I found it!

It’s nothing fancy, just pizza crust made from sweet potatoes instead of the standard semolina flour, but I wanted to try it out since it would be a “sneaky” way of getting A to eat veggies.  Let’s face it, she loves pizza, as long as it is cheese and isn’t a piece so long that it sags.  Basically, if it’s longer than about 5 inches and anything other than cheese and light pizza sauce has touched it, she won’t eat it.  Rather funny, don’t you think?

Anyhow, it’s a fairly easy recipe and thanks to the personal size pizza pans my mom found, I’ll be able to make and freeze some so I have something on hand to feed A, just to add variety.  I plan on seeing if I can add other veggies to the dough if A likes the basic recipe. Things like carrots that can be cooked to mush and mashed up with the sweet potato so they won’t be too noticeable.

I hope.

Of course, never having tried this recipe I might find out that it’s absolutely horrid (to quote my son) and in major need of improvisation to make it edible.

But I think I’ll be positive.  It’s much easier.

Sigh.  Enough procrastination.  Back to the paperwork I go…or maybe I should just go to bed early tonight!

 

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?

 

Monkey wrenches and other hiccups

With the arrival of Memorial weekend comes an increase in reminders that hurricane season is “just around the corner!”  That also translates to time to start making sure you have emergency supplies on hand.  Normally,  I wouldn’t think twice about what we would need.  I mean, enough canned food and water per person to last 3 days.  Not a big deal right?

SCREECH!  THUNK!

That would be me realizing that I have a child that will not eat anything that comes out of a can, except certain fruits.  But only if they are cut in nice little bite sized bits.  Oh, and don’t have too slimy of a texture.  They should be sweet too.  But not too chewy or too crisp.

Yeah…this year is going to be more difficult than I thought.

Realizing the extreme limits of my daughter’s textural tolerances when it comes to food has led me to adjust most areas of planning for things.  Sadly, for someone who has lived in a hurricane prone state her whole life, the thought of how I would have to adjust emergency planning never entered my head.

I think on some level when we started this adventure I bizarrely hoped that we would wake up one morning and she would be “normal”, at least with food.  Even knowing that my child would spend the rest of her life with sensory issues, I still would, forget I think is the best word for it.  It’s not quite denial but it is those moments when acceptance is harder than normal.  When you want to cry and scream at the injustice of a child, your child, having to live with something that makes their life so much harder, until that moment when you realize that they don’t see themselves as different.  That they don’t see this as an injustice.  That, to her, she is just A.  Her mommy’s little monkey.  Her daddy’s little girl.  Her brother’s playmate and, occasionally, his annoying little sister.  That, more than anything else, is what gets you through the day sometimes.  All the advice and support in the world can only get you so far.  It’s those moments when you realize that, to them, they are “normal” that can get you through the tougher moments (even if they do seem to last for weeks on end).

So, I’ll take a deep breath, go back to making my hurricane emergency box list and hope I never have to actually put it to use.  But I’m still stocking up on peanut butter, crackers, and pediasure  just in case.

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