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.

Oh Yes, We Call Her the Streak!

She’s just in the mood to run in the nude!  Guess you could call it unique!

Okay, enough with the Ray Stevens reference for now.  (For those of you not familiar with Ray Stevens or The Streak this will help you understand the humor.  http://www.youtube.com/watch?v=XtzoUu7w-YM)

It’s been a “clothing optional” week for A.  Yep, she has decided that clothing is offensive to her tactile system.  On the upside, she has not yet stripped in public.  She has tried a couple of times, but I have so far managed to successfully distract her.  At home though, she has so problem stripping down and running out yelling, “NO UNNIES!”

Okay, you can stop giggling now.

In addition to this new development, she has had a noticeable increase in expressive language.  It’s been amazing to hear her actually use two word “sentences” when she wants something or when she’s trying to tell me something.  Right now, her favorite phrases are “me too” and “no unnies!”

Yes, my daughter is out of pull ups except at night.  She woke up a week and a half ago and loudly proclaimed that she did not want a pull up, she wanted “Unnies!  Ninnie Unnies!”  So we, gave regular undies a try and so far, so good.  She has decided that she wants to be a big girl and I am quite okay with that.  It has definitely made things easier in some respects, but public bathrooms are still sometimes tricky.  That’s what earphones are for though!    So, while potty training is mostly done, we still have to work out some of the kinks, especially on her sensitive days.

On an even happier note, with the return of the school year, A will be resuming occupational therapy and with that listening therapy.

Wait, what?  What is listening therapy?

That’s about the reaction I had initially. I’m still not sure I can explain it very well, so here’s a link for the company that makes the headphones used for the theraputic listening program,  http://www.vitallinks.net/pages/About-Therapeutic-Listening.php
I think they can explain it much better than I can at this point.   I still have a lot to learn.  I am hoping, since everything I have heard is positive, that it will help A.

In the meantime, we will just have to continue to work with our little Streak  in all her uniqueness and continue to be patient!

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?

 

SUCCESS! And setbacks.

Yep, we’ve had a success.  Well, actually it’s more like two but rolling them into one makes things easier.  What success am I rambling on about you ask?  A licked a chicken nugget and took two bites of a carrot stick.  But, not only did she take those two bites, she chewed and swallowed them!  Yes, that’s a big deal around here so stop rolling your eyes.

A loves carrots, but she has the hardest time swallowing them.  When chewing, she hits a point where it’s almost like she can’t feel the food in her mouth well enough to tell where it is so she can swallow.  She has been struggling with this for what feels like forever.  Anytime we have carrots, which is quite frequently, she tries one but usually after one bite, I have to clear out her mouth with my finger because she is gagging.  I cannot begin to tell you how ecstatic I am that she managed to swallow two bites.   Granted, she didn’t eat any more after that, but I really didn’t care.  She had two bites! She had two bites!

Happily she followed that success up with licking a chicken nugget dipped in honey.  Normally, it wouldn’t seem like a good thing, a kid licking their food, but it is such a major, major step forward for A that I’m still, three weeks later, over the moon about it.

When I started this blog, I had intended to post something every week.  Unfortunately, I did not reckon on the force that is A.  All the good intentions in the universe mean nothing to a child, special needs or not.  When they decide not to sleep or not to eat or throw hour plus long fits, there isn’t much you can do except hang on.

Regrettably, we recently and inadvertently created a situation that caused A to have a major backslide.   She had been doing so well using the potty, sleeping, eating, everything and within a week it was as if someone took a wet rag to the slate and totally obliterated everything.  Since we rectified things and “undid” the situation, A has slowly been returning to “normal.”  I just wish that was a quieter process.  Our whole household, small as it is, has been enduring endless tantrums and fits.

Okay, maybe not endless, but it sure feels like that way.

It’s hard to be positive and think happy thoughts when you feel like you are stuck in a dark room stumbling around to find the way out and the parameters keep changing.  But, in the words of Professor Dumbledore, “Happiness can be found even in the darkest of times if one only remembers to turn on the light.”

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