Monday, January 30, 2012

Dante Needs a Pity Party

Today Alexander came running out the door, up to the open van window and said, "Don't be leaving your crap behind!" as he handed me the stool sample (in its container) that I had forgotten to grab out of the fridge.  Wow, a kid turns 18 and suddenly he can talk any way he wants to mom.  Anyhow, he was only half was actually Dante's stool sample I was leaving behind.

Poor Dante had three different appointments today.

First he had a fitting for some new orthotics.  He will either be switching to ankle braces, or to articulated leg braces.  He still needs support to help his feet keep the proper shape, but he also needs to be able to bend his ankles.  Dante did not appreciate the stockings and plaster wrap, but hopefully in a few weeks he will appreciate the new SMO's.

Second he had a dental cleaning.  No cavities!  His gums look great!  And his current nasty cold has not effected his vocal chords.  The dentist is amazing, and spoke calmly to Dante throughout the whole cleaning despite the loud protests and writhing about on Dante's part.

Third, after a two hour lunch break at home, Dante was off to see a gastroenterologist.  She would like to rule out a few possible causes of his bowel issues (hence the stool sample I almost forgot), and if nothing shows up we will go fully with the gluten free/casein free diet.

One exciting observation in all the tiresome activities today:  when we were in the waiting room Dante was watching the Backyardigans on his iPad.  Suddenly he started waving his arms back and forth and swaying.  Dante was following the motions of the characters as they sang and danced!  It was absolutely adorable and amazing. 

In all, my nine kids had a total of 20 medical appointments this month! (Did I mention Amelia has strep for the third time in a row? And Dante has Alopecia to add to his list of diagnoses?)

I am hoping we have fewer appointments in February, but thankful for the good medical care we have available to us.

God is good!

Tuesday, January 24, 2012

8 of 9 Strikes Again

I should have known better.  If the kid giggles too much or is too quiet it is time to check on him.  I was so pleased that Leif was playing quietly in my room while I rearranged bins and put away the bulk order of wheat in the kitchen.

Silly me.  Leif wasn't running around chasing the cat.  Leif wasn't trying on everyone's shoes and leaving them strewn about the living room.
My sweet little man was just playing quietly in my room.  With the crisco.

I should have known better.  After all, doesn't this look like a toddler who likes to sit and play quietly?

Sunday, January 22, 2012

The Bear in the Yard

This morning Amelia suddenly pointed out the window and began anxiously saying, "The Bear! Outside!"

I was not concerned, because we in the center of town, and our yard is completely surrounded by fencing.

She was clearly concerned and kept pointing and repeating, "The bear outside!!"

It was not until she said, "The bear is in the swing" that I had to look.  A bear would be unusual in this area, but a bear enjoying our swing... well that could be you-tube worthy.

Or maybe not...

(I think ShanLin needs to take better care of her pets.)

Thursday, January 19, 2012

One of Nine is Eighteen Today!

My eldest is 18 now. WOW.  He should be thankful I don't have any baby photos of him in the computer.
Happy Birthday Alexander, we all love you!!

Tuesday, January 17, 2012

"Look at that Hair!!"

 Such a good baby in the tub.
 Doesn't cry, but just get through the rinsing!
 Not what she meant when she asked me to comb her hair?
Much better.  And we LOVE the eye contact!
And a random photo of our beautiful ShanLin being goofy.

Saturday, January 14, 2012

Please Don't Feed the Dante

 This is Dante many years ago, I think right around when he was 1 1/2.  He was the cutest baby ever.  Dante struggled with hypotonia, severe constipation, and developed eczema on his wrists and along his jaw, but he was making progress.  By the time Dante was 3 he was just about walking, fed himself with utensils, and had at least a dozen words and signs that he used consistently.

A few months after he turned 3, Dante had an autistic regression.  He lost everything.  We had to force feed him baby food, we had to wrap his bed railings with foam because of his headbanging, he stopped walking, talking, and signing.  For several months he had a permanent bruise on his forehead from the headbanging.

In the last 3 years he has come a long way, but is still not talking except for some miscellaneous words, and he has about 3 signs you have to really watch for.  He still has the same hat as in the above photo, but he screams and fights wearing it, due to his sensory issues now.

How does the cutest baby in the world go from that to this?

He still has his loving moments, with those of us in his inner circle.  And as long as we leave him with his iPad or musical toys he is fine. When he comes to the table we are good as long as we provide him with food before he starts throwing everything he sees.
This is not good enough for me.
Am I trying to cure him, or help him live with the autism?  I cannot decide which it is I am doing, but I will keep trying to bring him back into our world.

His dermatologist does not know why he has eczema, but says it is not food related.  I know however that when I completely took him off dairy he almost completely cleared up.  This also helped with his behaviors.  I have now also taken him off citrus fruits, corn, and strawberries in my quest to completely eliminate his itchy outbreaks.

And now we have decided to try also taking Dante off gluten, which is going to be very hard.  We are just testing some theories about the effect of wheat gluten on the gut, and therefore on behaviors.  One thing I do know is that when Dante had his regression three years ago, he went from constipation so bad he need medication--- to the most disgusting smelly down the legs and up his back yuckiness daily.  Three years and he is still like this.  It seems only natural to assume the bowel movements and behaviors are related since they changed simultaneously.

But Dante loves bread and pasta, so I have begun experimenting with gluten free flours.  Unfortunately the least expensive flour is almond flour, and Dante's school is a "nut free" school.  His favorite beverage is almond milk and his favorite snack is bread with peanut butter.  All of which he cannot have for lunch on school days.

This isn't an inexpensive endeavor, either.  The flours in the jars below cost me $45!  Once I know which ones work best for gluten free baking I'll find a way to buy them in larger amounts for less cost.  We have also started him on probiotics and fish oil.  Fresh fruit is also costly, but a healthier boy (and family) will be worth it.
ShanLin and Leif were my happy helpers, although for some reason they decided to rub baking soda on their bellies.  My first experiment was pumpkin muffins, which Dante loved.

We also now have Dante going to private Occupational Therapy once a week for Sensory Therapy, and I am trying to get him to see a gastroenterologist that is also an autism specialist, to see about that link.

I think his treatment is slightly more complicated because Dante is not just a kid with Down Syndrome, or just a kid with Autism.  He is a kid with both.  But we'll keep loving him and doing what we think is best so our boy can reach his maximum potential.

God is good!

Tuesday, January 3, 2012

December Do-Over

Although my husband might disagree, even if he would never admit to it,  I try not to be a whiny person.  But the last few days instead of appreciating the new year, all I want is December back--- I want to go straight back to the first and start over.  I would make the chocolate covered cherries that I have made for at least ten years and didn't get done this year.  I would make the toffee and peanut clusters.  I would knit the hats for my little ones that I never even started.  Didn't start a single one.  I didn't even get to watch "Rudolph the Red-Nosed Reindeer" and "Santa Clause is Coming to Town" with the kids when they were on TV. I'd be hyper-vigilant with Dante so his cold didn't become strep throat and then get into his skin and give him cellulitis so the poor child had to spend four days in the hospital....causing the whole family to not be together Christmas Eve when we watch "Muppets Christmas Carol" and then to not be together for the stockings and gifts Christmas morning.  I wouldn't strain my back and spend most of what was left of Christmas break not being able to work or help do the household clean up I had so wanted to get done.

Who am I kidding?  Getting a do over would just mean repeating the craziness, even if it was a slightly different craziness.  And I'll admit, as long as Dante's pain meds were kept up we kinda enjoyed cuddling on his hospital bed for hours on reading "War Horse" with one hand on the book and the other on his wrist so he wouldn't pull out the IV, and him leaning in to me watching the same 3 episodes of Kai Lan over and over while dozing now and then.

So now we are into another month of me feeling like I am always one step behind on laundry and household stuff.  Already there are 12 appointments on the January calendar, not including Dante's new weekly Sensory Therapy.  And Kimberly's weekly in home therapy-both of which are so important and helpful for them and me as I work with them daily.  And there are NO appointments on the February calendar! (yet)

It's just life, and a good one, so there really is nothing to whine about.  Especially when I can always just take a break to cuddle with Kimberly or play with the increasingly mischievous Leif. (Yes, he is wearing a Christmas beret that goes with one of Kimberly's outfits.)

Besides, who needs a December do-over when there are New Year's resolutions to keep?
My 2:
* Try harder
* Do better

I figure that covers everything.

God is good!