Tuesday, August 23, 2011

The beautiful things

So, at some point last week, or the week before, I wrote that we had had several beautiful things happen that I wanted to write about.  So, here they are (and there are too many to put all into this one blog post!)

OT Therapy
I don't write about it often, if at all, on this blog just because this is an allergy forum and not a SPD (Sensory Processing Disorder) forum - but Duncan was granted OT through the county!  This is HUGE!  Monstrously HUGE!  Food and Duncan and SPD and gut issues are inseparably linked.  It's all  a part of him and it always will be.  For those of you who aren't aware of what SPD is (don't feel bad - a little over a year ago I had no clue either) it affects all of your senses all of the time.  The best way I can describe it is like this (and it is a neurological disorder of extremes):
*If you get nauseated or a headache walking through a perfume department in a store - imagine feeling like that all the time with ALL smells.  (Food, animals, juice, garbage, perfume, flowers, grass - etc.)

*If you've ever had a sinus infection and couldn't smell anything for days on end, imagine smelling nothing ever...except maybe having one key scent that either drives you wild or really gets your motor going.

*Imagine if a slight gentle breeze felt like someone was throwing daggers at you that caused the fear and panic you would expect from someone in the midst of a tornado's presence.

*Imagine if your brain didn't process pain normally because your nerves/nervous system couldn't process touch sensation the same way as others so in order to feel anything you harm yourself constantly because actually feeling something, anything, is a strange high.

*Getting dressed and undressed literally feels painful.

*You need tight squeezing shoes (two sizes two small) to make you feel like you know where your feet are so that you can walk properly.

*You can't 'see' things normally because your field of vision gets overwhelmed and your brain blocks certain parts of your vision field out for processing to a certain extent.

*Your brain doesn't make the connection between hunger and eating so you would literally goes days without nourishing yourself if you didn't have someone to force feed you something as small as a cracker.  You ARE feeling hunger - but your brain just doesn't make the equivalent connection to the solution to hunger being that of eating. 

*Imagine feeling so nauseous and off balance every time you lied down that it took you 2 plus hours to fall asleep and ANY teeny TINY noise would wake you immediately from a dead sleep and then you'd start the two hours to sleep process all over again...that is if you ever fully went back to sleep.  Now imagine having a baby like this...and a baby that rarely slept---- ever.  If he did sleep it was so long that it was medically dangerous.

The list could go on and on.  Every sensory kiddo/adult experiences different things.  But, Duncan has SPD.  He barely walked away without an Autism diagnosis (this is due in part to the fact that we had changed his diet and his comfort level/behaviors had improved so much so upon the time of evaluation that he just barely missed the diagnosis.)  

So, what does Occupational Therapy do?  OT 'teaches' children/adults who need help learning natural normal things.  These are the natural normal things that they need to know in order to live and functional normally in society, their own world and most importantly their own skin.  With OT Duncan started talking (in Jan. coming up on nearly 2 years old he couldn't even say Mama - now he can say "Ambulance,")  he started eating, he started eating things that weren't laden in garlic only, he started gaining weight, he started walking without face planting, he stopped spinning in circles for 20 minutes+ to the point of self injury, he stopped biting himself until he bled and he actually started to sleep easily, well and hard.

I can't mentally recall at this point in our journey exactly all of the benefits that we received through OT - but all in all let's just say that OT made Duncan's ability to be the best Duncan he could be possible.  In the past couple of months without adequate OT all of the positive progress we had made definitely large backslide type of movement.

We had Duncan's 6 month review with the county (he currently only receives a teacher 2xs a month) infant/toddler supervisor.  She decided that it was imperative that Duncan get therapy through the county as soon as possible since we are in an insurance lag right now (long story.)  He will begin receiving OT 1x a week as soon as a therapist is available. 


This could start next week or it could be October.  But in any event SOME therapy is MUCH BETTER than NO therapy.  :)  Beautiful. Beautiful.  Beautiful.  Answered Prayer.

Pro-Thera/Klaire Labs
As some, but probably not many, of you know Duncan is on many digestive support measures including digestive enzymes that he must take every time he eats.  His body does not make enzymes that the average person makes naturally so this has to be supplemented for him.  For digestive health (for a multitude of reasons) he is on: a Prebiotic Fiber powder so that his body actually digests his food and eliminates yeast, a Probiotic

Finding enzymes/vitamins - etc is difficult as corn is used as a filler in almost everything.  I found a wonderful enzyme for Duncan that is working wonderfully from Klaire Labs at our local Healthway Store.  I was told a couple of weeks ago that they would probably no longer be carrying the supplements.  This was a huge bummer as there was nowhere else around to buy this enzyme (or the probiotic powder.)  

So, I called Pro-Thera, the parent company.  I was told by a very nice and polite customer service rep that the reason that their enzymes were being taken out of the health food store was that the supplements were not supposed to be sold retail.  They could either be sold by doctor's in their offices or doctors could call in and allow certain patients to buy direct from Pro-Thera for approved products.

I was 99% certain that Duncan's Ped wouldn't have an issue with 'prescribing' these for Duncan - even though they are non-Rx based enzymes.  The only problem was that we were running out and needed them soon!  I called Duncan's Ped's office and left the traditional message on the nurse line.  The nurse joyfully called me back and said, "No Problem," essentially.   

Here's the beautiful part:  The next day the head nurse called me back.  Duncan's doctor was on vacation, but they had contacted her.  Not only were we being given the code that we needed to order that particular enzyme - Duncan's doctor wanted Duncan to receive his own account with Pro-Thera so that I can order for him whatever he EVER needs from this company with no further permission.  

Duncan's doctor trusts us.  She knows that we have been the large driving force in keeping Duncan's little premie self here and alive and well.  We have figured out things that most people wouldn't, we have kept him healthy, fed and properly medicated (which is a difficult feat when you're child is allergic to the primary ingredient in everything.) - We were even willing to undertake a 10-12 hour drive round trip at one point to get him anti-biotics.  (Thank goodness we found a pharmacy just a little closer that could give DUncan exactly what he needed to heal him and keep him safe at the same time.)  

She trusts us.  To know that his Ped trusts us to the point to say, "You can get your child whatever YOU feel he might need" is amazing.  We love her.  We have always loved her.  And, we feel we have the best Ped in the world.  :)  I could never ever imagine having a better Pediatrician than her.  She cares for Duncan so much she has told me in the past when he was really sick that she would lose sleep over him trying to sort out in her mind what was wrong with him. 

We love her.  In a world full of doctors pushing lots of chemicals, or denying necessarily tests, treatments or supplements/referrals and not listening to their patients, and parents, and writing the average first time parent off with a child that needs special accommodations as over-zealous or idiots - Thank God literally that we have the gem of a Ped that we have!

Beautiful.  Beautiful.  Beautiful.  We are so grateful.


Those were the two main items of beauty.  We have had several more including new items added to our safe list such as Virgil's sodas and Izze natural sparkling drinks (this is huge because Duncan needs 'bubble drinks' to give him adequate input through his nerve endings in his mouth so that he is more willing to eat, less likely to make himself vomit on purpose just to feel anything/something and less likely to bite himself.) 

I have found a readily available store-bought jam/preserve that is completely free of everything he is allergic to also.  I have located more Shampoos, lotions and hair care products (Go Me - b/c I haven't used any in two years - and these are free of nasty chemicals too!!!!!!!)  The new lotion is going very well. 

I also made my first extremely successful allergy loaf of bread in two years!  YAY!  It tasted like normal bread from a bakery!  And, I made some scrumptious strawberry muffins that will definitely have a repeat performance.  I also, in a bit of serendipity (one of my favorite words - it means a fortunate accident,) figured out a great brownie recipe.  And, I had some very thoughtful friends share some recipe and ingredient ideas with me on Facebook.

Oh, and you want to know the best most beautiful thing ever?

A few days ago Duncan and I were cuddling and watching one of his cartoons.  I said, "I love you Duncan," and kissed him on top of the head.  He glanced at me sheepishly and then looked away so I wouldn't 'see' him and said, "I Love you Too Mommy."  

Priceless.  Those moments don't happen often, but boy when they do they are beautiful.


No comments:

Post a Comment