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?