Update on the iPad Challenge . . .

We have sold 3 pieces already!!!!  THANK YOU!!!!  I am really excited about this - Isaiah doesn't even know about it (I didn't want to tell him about the iPad until he actually earned it, he just thinks he's doing a fundraiser).  Just so you know, this is legitimate.

There is a very compassionate lady, here in FL, who has a son with Autism.  She started a jewelry (and other things) company to raise awareness and funds for people with Autism (funds go toward research, Surfers for Autism, and therapy).  If you want to know more about The Puzzling Piece and a bit of the owner's story, here is an article about her and the company: http://www.wpbf.com/Mother-of-autistic-child-starts-Puzzling-Piece-charity/-/8789538/9834438/-/8vfwsx/-/index.html#.UWh57nFGCoI.facebook.

I can hardly wait to see Isaiah's face when he receives this iPad - he will love it!  Please, share this with your friends and family - the more help we get, the more he will sell & earn toward his iPad.  He has to sell at least 60 pieces to get an iPad.  Each item on the iPad Challenge tab counts as 1 point toward an iPad - so, literally, he has to sell 60 items.  Anything over that goes toward an iTunes gift card for apps (so the more he sells, the better - there are great apps out there for people with ASD, some are free, some are cheap, but the really helpful ones are a bit pricey).

Here is an updated flyer for you:

So, please visit The Puzzling Piece at http://www.thepuzzlingpiece.com/products_ic.html and order one of the above items.  Make sure you enter my name (Kelly Sandy - the account is under my name, since I am the adult) in the Challenger's Name box (below the item you selected).

Thank you, again, for your help!

Help Isaiah Earn an iPad!

That's right, earn. :0)   iPads have been wonderful for people with ASD (Autism Spectrum Disorder) - there are tons of apps to help individuals with Autism that are available on the Apple market (more than on the Android market).  Even Isaiah's online school offers apps for the iPad.  I have really wanted to get him one, but they are way out of my price range . . . now, there is a way that he can earn one (and continue to earn points toward an iTunes card to purchase apps). :0)

Here's how you can help . . .

Visit The Puzzling Piece and view the items under the "iPad Challenge Pieces" tab.

Once you select an item, look for the "Challengers Name" box and enter my name or Isaiah's name (if you need to know, just send me a message).  :0)

Place your order and that's it!

Every item you purchase helps Isaiah earn another point toward his iPad as well as further research and help families afford therapies for their loved ones with Autism.  We have to sell 60 items to earn an iPad, so, please feel free to share this with your family and friends (just make sure they know my name or Isaiah's name).  :0)

Thank you, in advance, for your help (and thank you to those who have already placed an order)!

Light it Up Blue for Autism Awareness

We're lighting it up blue today for World Autism Awareness Day (April 2)!  Of course, we'll be lighting it up blue for the whole month of April (April is Autism Awareness Month) . . . :0)

Flustered . . .

That is about the only word I can think of to describe the last appointment Isaiah had at Miami Children's Hospital.  Flustered.

On December 21st, Isaiah had an appointment with Neurology, where much was discussed and labs were decided upon.  So, labs were drawn and we went home.  I expected not to get an explanation for all of Isaiah's unexplained symptoms at that appointment until labs were back.  The labs were mostly genetic work-ups along with organic labs - most were labs that would take about 6 weeks to get back.  Well, December 26th, we got a call saying that some of the labs were back and they were elevated and that we were being transferred from Neurology to Neurogenetics.  No explanation was given, just that we needed to be seen by Neurogenetics in the Brain Institute. I wondered what all of this was about, but I tried not to worry - I was hopeful that we may get an answer as to what may be affecting Isaiah.

This brings me to now . . . February 27th.  Going into this appointment, I have to admit, I was a bit anxious.  I prayed A LOT.  I wasn't worried about God bringing us through this, I was worried about hearing the results of the labs.  Just hearing the words and a diagnosis that may or may not have a cure or treatments.  Words that may or may not bring understanding to the puzzle of my little boy.

Well, we were called back and began going through a detailed history with a nurse practitioner, who was very thorough and polite.  After the history was taken (which, by the way, took about 30 minutes - it was that detailed), she quickly glanced at the labs and said that everything was fine.  Wait, what?!?  Not that I wasn't happy, but what about the elevated labs that sent us to them in the first place?  Oh, wait, she looked over them.  :0}  So, it turns out Isaiah's pyruvic acid and his lactic acid are elevated.  What does that mean? That's partially what left me flustered.

After that, she proceeded to try and find Isaiah's reflexes . . . :0)  Notice, I said, "try".  If you have followed my blog for a while, you might recall previous trips to the neurologist where we found out that Isaiah's reflexes were pretty much non-existent. She tried for quite some time, saying that if they were to be found, she would find them.  Isaiah entertained her by smirking and kicking exaggeratedly a few seconds after she tapped his knee.  She didn't notice and proclaimed, "There it is, I knew I could find it!"  I didn't have the heart to tell her that after all that tapping, he had done it on purpose - didn't want to burst her bubble.  :0)  Anyway, she continued to try and find other reflexes and then just finally gave up to go and get the doctor.

When she came back, she chatted with us a little while we waited for the doctor.  A few minutes later, two doctors came in and introduced themselves.  The nurse practitioner went over all of the history with them and two other doctors entered and introduced themselves - this time, one was the doctor we had made the appointment with - the head of the Brain Institute (so, we went from an appointment with the head of Neurology to the head of the Brain Institute).  :0} So, that makes one head of the department, one resident, two med students, and a nurse practitioner with the three of us (my mom went with me - I am not a fan of Miami) crammed in that tiny room trying to figure out the mystery that is Isaiah.

They quickly went to work, checking Isaiah's reflexes, trying to tickle his feet and check test out his neuropathy, asking him questions (always interesting because he doesn't always give an appropriate response), :0) and just examining his physical characteristics.  They chatted quietly amongst themselves, pausing only to ask us questions every once in a while and to tell us that we should probably see a cardiologist for the heart concerns.  They discussed labs already done, tests already completed, symptoms, and family history, then decided on testing.  What I could gather from the conversations were that more labs needed to be done and that they wanted another EEG.  Then, they turned to us and said that they wanted to admit him for 72 hours sometime soon (initially this Monday, but I convinced them that later is better, sooo March 18th) so that they could do a video EEG - a in-depth EEG to look for seizures and other abnormal brain activity.  The admission will also allow them to do labs that they wouldn't be able to do otherwise.  I heard terms like "mitochondrial" and B12 and all sorts of other foreign terms.

That was it.  That was the appointment.  Three and a half hours later and they never turned to us and say, "we'd like to do testing for this or that."  Only discussion amongst themselves and "we're doing this, see you soon," and out the door they went.  The nurse practitioner stayed behind to take us to scheduling and that was it.

I left more confused and with more questions than before I went in there.  What in the world just happened? What's going on with my child?  If you don't know what it is, what do you suspect it may be?  Why all the testing and what is it for?  Are they just to rule out things or are they to prove an idea?  I guess I will have to wait and prepare ourselves for this 72 hour admission beginning on March 18th (which is no small feat with my active child).  :0}

I don't mean to sound so negative about the appointment - I know they are trying to answer the same questions that I have. It was just that chaotic and confusing. Let me rephrase that: I think the head of the department was trying to teach the others and it appeared to be chaotic & confusing to us. :0)

After Miami, St. Petersburg is a breath of fresh air. The next day, Isaiah had a routine appointment with the AIR Clinic (yes, we traveled across the state - two appointments in two days . . . in separate cities, at separate hospitals).  Isaiah's doctor is trying to change up his meds to make sure he doesn't get used to anything and to make sure that the meds are still working for him.  When I mentioned all of the info. we gleaned from the Miami appointment to his allergist, she agreed that testing for a mitochondrial disease makes sense and that he fits the description.  She gave as much encouragement as she could and said that MCH was the best place for Isaiah to be for neurology/neurogenetics - they are world-renowned and one of the top pediatric neurology specialists in the country (she had already done some homework on this before our arrival).

All in all, we're left without answers right now.  I'm not 100% okay with that, but I know that the answer is coming . . . it may not be a comfortable place for us, but everything is going to be okay.  God never guaranteed our comfort, he guaranteed He would be there and that He would provide comfort, peace, hope, joy, guidance - the list goes on.  I have no doubt that in this season or chapter in our life, whatever you want to call it, I know that God will guide us through this.  I know that God has a plan for Isaiah and for this . . . whatever it is.  My uneasiness isn't in my faith in Him - I know He has answers and solutions.  I know He won't leave us to walk this path alone.  This is new for us, but He has already been there - I am so thankful that He holds us in His hands.

What's Up? ;0)

I know, I know.  I haven't blogged in a while.  Things have been busy, lately and, well, just haven't gotten much of a chance to blog.

It's not that Isaiah hasn't had reactions (anaphylaxis) or new symptoms, it's just that it is all becoming so normal to us.  So normal, in fact, that I just don't even think about blogging even when I do have the time.  At least it hasn't been so bad, though, that I have to keep you updated. :0}

Let's see . . . where to start?  Well, over the summer, Isaiah started having some new symptoms that we still have no clue what's going on.  He started turning blue in the middle of the night.  So, we had some tests run to figure out what may be the cause.  Isaiah had an EKG, EEG, and an echocardiogram   His EKG was normal.  The other two, not so much.  Isaiah's EEG showed that he could possibly be experiencing some kind of seizures and his echocardiogram came with a list of not-so-great (but not-so-bad that it means emergency treatment) results.  His echo showed that his left ventricle is enlarged, he has 3 leaky valves, and has a murmur.  Oh, and they couldn't rule out a hole in his heart or unusual position/size of an artery.  Hmmmm.

For now, I don't know what all that means - we're waiting on further explanations. We did see a cardiologist, but he had the results from an EKG to go over, the echo results hadn't been given to him at the appointment.   Did I mention that my insurance wouldn't cover the echo, so they rejected the claim?  Thankfully, the hospital forgot to mention this, so we cannot be charged or billed the $3,000 for the exam - the hospital is stuck with it.

Anyway, Isaiah has an appointment in a couple of weeks with the head of the pediatric  neurology department in Miami to (hopefully) shed some light on all of this (including the neuropathy).  Our local neuro was hoping that Miami Children's would be able to do some kind of testing that will give us info on why Isaiah is having the muscular, neuropathy, and now the seizure or heart issues.  Hopefully, they will either do the testing right then and there (it's a nice 4-hour trip to Miami) or figure something out and give us some kind of an idea as to what is going on.

The amount of Epis Isaiah has had in his lifetime has been a concern as far as his heart goes.  Seizures?  I don't know, but his previous EEG didn't show any seizure activity and (for some reason) this one does.

As far as Isaiah's masto & allergies, his IgE is well over 3,000 and hasn't shown signs of coming down.  He is maxed out on meds and has even started another adult med to control lung symptoms (it's not asthma, but we're treating the symptoms with asthma meds).  He takes the adult FDA limit dosage for Xyzal - that's pretty much 4 times the amount normally given to an adult.  The other med he is on (for his lungs) isn't supposed to be given to children under the age of 12, but he needed it . . . so, he's on it twice a day.  His dosages have been adjusted, but nothing else has really changed.

On the Autism side of Isaiah :0), he has been put on a medication to help calm him down. :0)  Yes, little man bounces off the walls.  He is now on two meds for Autism symptoms - one to treat anxiety, one to treat his hyperactivity.  :0)  Let's just say, he sleeps nicely at night, now. :0)

As far as my dad, his lab results are showing that he is now in stage 3 renal failure, his blood is thickening (from Waldenstrom's), he has diabetes, and he is anemic.  He falls asleep standing up or sitting down . . . yet, he somehow managed to put lights on the house for Christmas!  Yes, my dad was on the roof!!!!  I don't know how he does it, but maybe the fear of falling to the ground because he fell asleep was enough to keep him awake up there. :0)  He has also been really dizzy and has total hearing loss in his "good" ear (dizziness is from damage caused by Meniere's Syndrome and the hearing loss is from Waldenstrom's).

Other than that, he continues to keep himself busy - he's not the type to sit still for very long . . . unless he's napping. :0}  He is very quiet and a bit on the moody side.  He does talk a bit when he's in a good mood, but gets really quiet (after fussing a bit) when he is frustrated or upset (usually because he gets confused or isn't able to do what he wants).

Overall, though, we are blessed.  Things could be so much worse and they're not.  God continues to bless us with good days and even good moments on bad days.  I have no doubt that He will continue to bring His blessings, joy, peace, comfort, direction, and hope to us - that's just who He is.  I am grateful for the love that He shows us - and for the mercy He brings us to help us get through the difficult times.

On top of that, it's my favorite time of year - the time of year that we celebrate the faithfulness and amazing love that God has for us.  I love this time of year.  It kicks off with Thanksgiving - a time to celebrate how thankful we are for God's provision, etc.  Then, there's the Festival of Lights (Chanukah) - 8 days to celebrate and remember God's faithfulness and protection.  It "ends" with the greatest gift God ever gave us - the gift of Jesus.  I just LOVE this season!  Of course, there is also the love and closeness of family, the great and happy music (I get to listen to Bing Crosby!!!!) and all the movies (my favorites being It's a Wonderful Life, White Christmas, Elf, and It's a Meaningful Life (the VeggieTale version of It's a Wonderful Life). :0)

Since this post has already gotten very long, I will end it with this: what ever you are going through, God will walk with you through it.  His love is enough and He will make sure you have all you need.

Blessings, Happy Belated Thanksgiving, Happy Chanukah (which begins tonight!!!!), and Merry Christmas!

Isaiah-Friendly Laundry Soap :0)

I posted this recipe a while ago, but I had a few people asking me for detailed instructions on how to make this stuff . . . so, here it is. :0)  I really like this stuff and it lasts a lot longer than a regular bottle of laundry detergent (and it can be cheaper, too).  

This soap is great for people with skin sensitivities (like Isaiah) because you use the soap that your skin tolerates.  Most of the time I use Vanicream, but recently I am trying Fells Naptha (just because it cleans the clothes a bit better).  The Vanicream cleansing bar used to be a bit pricier, but it's now only about $3.49 per bar at Walgreens.  Fells Naptha is $.97 at Walmart . . . and you use only half of the bar (it's a big bar).  Vanicream has no perfume, so there is no scent to your clothing - you clothes come out of the wash smelling fresh.  With Fells Naptha, there is a bit of an odor, but (surprisingly) your clothes don't really pick it up (especially after a second rinse).  I have also used Ivory, but Isaiah breaks out from the stuff - you can use whatever bar of soap you prefer.  I do not recommend anything with olive oil - your clothes smell good at first (and are amazingly soft), but you will smell like B.O. after a while.  You can even use liquid soap (about 2 cups of it), just make sure to reduce the boiling water from 6 cups to 4 cups.  
 To protect Isaiah even further from anything that might be irritating to his skin, I also put our laundry through an extra rinse cycle. 

Okay . . . so on to the recipe.  Here's what you'll need:

A 2 to 3 gallon bucket with a lid (I found mine at Walmart for about $5.00).  I found a lid with no writing or decorations on it so that I could write the recipe on the lid with a permanent marker - that way you'll never lose it, even if you have to rewrite the recipe from time to time.

1 bar of soap of your choice (or 2 cups of liquid soap of your choice) - we use Fells Naptha ($.97 at Walmart) or Vanicream ($3.49 at Walgreens).

1 box of Borax.  The only brand I have found is 20 Mule Team and it costs maybe $3 to $4 at Walmart or Target (yes, one of Isaiah's favorite stores carries this stuff)

1 box of Washing Soda.  This can be difficult to find, but it works MUCH better than baking soda.  Our local Walmart has finally started carrying the stuff - it's about $5.95 per box (it holds about 5 1/2 cups).  If you cannot find Washing Soda (by Arm & Hammer - it is also called soda ash), you can make your own using baking soda (fill a wide baking dish/pan with baking soda, heat it at 400 degrees in the oven - stirring occasionally - until it becomes soda ash . . . you will notice a difference in appearance - by the way, I found this neat trick here).  Or, if all else fails, use baking soda (a large bag/box can be found at Walmart for approximately $3.00).  :0)  

Lots of water.  Yes, tap water - it will be just fine to use tap water. :0)  You will need about 2 gallons of water for this recipe (6 cups boiling water, 4 cups of hot water, 1 gallon plus 6 cups water).

1 large, tall pot.  It will need to be large and tall so you have more time before the mixture boils over. :0)  

Essential oils or fragrance of your choice - this is completely OPTIONAL. Isaiah doesn't do well with fragrances, so we omit this ingredient.




Ingredients:

1 bar of soap, grated (or 1/2 Fells Naptha, grated / 2 cups of liquid soap)
6 cups of boiling water (or 4 cups, if you're using liquid soap)
1 cup of Borax
1 cup of Washing Soda (or baking soda . . . it's up to you - there is a difference)
1 to 2 Tbsp essential oils or fragrance (OPTIONAL)
4 cups of hot water
1 gallon (approx. 16 cups) plus 6 cups of water


Preparation:

Make sure you have your bucket ready with 1 gallon plus 6 cups of water just in case your mixture starts to boil over.  Trust me, you will be glad you have that bucket ready when the foamy laundry soap monster rears its ugly head . . . :0)  Laundry soap scorching on the hot eye of your stove does not, in any way, smell good . . . just so you know.  :0)


Directions:

1. Grate the entire bar of soap (or 1/2 the bar of Fells Naptha).  Sure, you could stand there forever waiting for the entire bar of soap to dissolve in all that water . . . grate the soap. :0)  I have used an onld fashioned hand grater, but who wants to do that?  I have found that my hands are much less achy when I use a food processor.  :0)


2. Bring the 6 cups of water to a boil.  Turn off the heat and dissolve the grated bar of soap in the water.  If you want to use liquid soap, boil 4 cups of water, turn off the heat, and mix the liquid soap in the water. :0)



3.  Once the soap is completely dissolved and mixed with the water, add 1 cup of Borax.  Stir until completely dissolved (you can add up to 2 cups of Borax if you'd like, but 1 cup does just fine).



4.  Slowly add 1 cup of Washing Soda (soda ash / baking soda) to the mixture - SLOWLY.  Make sure it dissolves, but at this point you may notice the mixture expanding quickly, so have that bucket ready.  It makes a huge mess if you're not watching it.  I haven't noticed this quite as much with Fells Naptha, but I have noticed it with the Vanicream-baking soda mixture (it's a lot like mixing baking soda and vinegar).  Boy, is that a mess and half to clean up!  On the bright side, you'll have a nice clean stove when you're finished. :0)

5.  Add 4 cups of hot water and mix.  OPTIONAL: Add 1 to 2 Tbsp of essential oils/fragrance to the mixture and stir.

6.  Add the soap mixture to 1 gallon plus 6 cups of water (if it hasn't already been added at this point because it has turned into the puffy laundry soap monster).  Mix well (that laundry soap monster will behave after being added to the bucket).  


7.  Let the laundry soap set overnight or for 24 hours before using.  You will need to stir the mixture before using it because it will either be one big gelatinous blob (with washing soda) or a thin layer of blob on top of a bunch of liquid (if you used liquid soap/baking soda).  I usually mix it the first time with my hands to make sure I get all the clumps.  After this, you will need to mix it with a spoon before using.  If you use the washing soda, the mixture will be a thick liquid - almost a gel.  If you used baking soda, it will be a thinner liquid.

Use about 1 cup for a large load of laundry (3/4 of a cup for a medium load, 1/2 cup for a small load).  For extra large loads (depending on what your washing machine can handle), I have used up to 1 1/2 cups of laundry soap.  

Have fun! :0)

Happy Birthday, Little Man!

I can hardly believe it; you are seven years old today!  Seven years ago, I waited for you to take your first breath - it seems like yesterday.  In other ways, it seems like a distant memory.  You have amazed me with what you have already accomplished - I can hardly wait to see what you will accomplish in the future!  You are such a sweet and happy little guy.  You make the room a bit brighter the moment you walk in; you always bring a smile to my face and warmth to my heart.  You mean the world to me.  Happy birthday, sweetheart - I love you to infinity and beyond!