Since the original video wouldn't upload . . . :0}

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Happy 50th Anniversary, Mom & Dad!

Over the past 50 years, you have helped each other carry life's burdens, sharing in life's joy and sorrow.  You have seen many changes and faced many challenges - you have so many memories together.  Thank you for all the values and morals you taught us - you have given us an invaluable lesson in life and love, what it takes to be a couple, and what it means to stick together as a family.  I love you guys!

Autism IS My Superpower!

Can you imagine hearing the words, "your child has autism?" In a split second, life - as you know it - has changed. For a different family, every 20 minutes, tomorrow will never be the same. In the United States alone, 1 in 88 children are diagnosed with autism (up from 1 in 110 children).

I remember hearing those words, though I already knew. I felt breathless. I cried the whole way home from the doctor's office. I called a good friend of mine, who also has a child with autism, and she reminded me of one very important thing: Isaiah didn't change - my perspectives had. Isaiah was the same little boy after the appointment as he was before the appointment - and that child was spunky, beautiful, brave, strong, quirky, funny, etc. In many ways, autism has made Isaiah who he is. Autism was already a part of his wonderful personality. Autism is his superpower. =0)

The reality is, though, some families facing this diagnosis do "lose" their children to the curtain or veil of autism. The person they were becoming seems whisked away and silence and blank stares sometimes replace their talkative and expressive selves. Don't get me wrong - autism isn't a death sentence and it's not the end of the world. But it does hurt to see your child drift or be snatched away - the child that you had known. In some sense, your child has disappeared.

Autism is one disorder that has fascinated me for years - I have had the honor and the privilege to work with several children on the spectrum over at least the past ten years. I love spending time with kiddos with autism - they are amazing and view the world in such a unique way. Sometimes, their perspective is scary and yet it can be beautiful. I love getting glimpses into the world as they see it - as my child sees it . . . even if it is sometimes perplexing. =0) I also love seeing their light-bulb moments, where they have learned something they have been working so hard on to master, and I love the challenge of helping them figure out and deal with the strangeness of "our world".

As I have mentioned in an earlier post, I am taking part in an event called Walk Now for Autism Speaks (it's coming up this Saturday). You have an opportunity to participate as well, either by walking with us or by supporting Team Super Nova (yes, Isaiah's self-proclaimed superhero name). =0) By participating in this event, you are helping to change the future for individuals with autism. By walking, you are getting us one step closer to finding what causes autism, how to prevent (and I use that word lightly) and treat it (through therapies and ways of teaching), and even helping them find their voice. It's not just about a cure (yes, there are some who long for a cure so they can hear their child say "I love you"), but it's also about helping families and individuals cope with autism in a very overwhelming world. Until we find the solution or the missing piece of this puzzle, we walk to find answers and raise awareness about autism.

It's not to late to join our team - either by walking with us or by donation (help us reach our goal)! =0) You can find links on my blog (you can click on any of the Walk Now links or the word "autism" in this post) and even here to my donation page. We have a wonderful team so far - but there is still room for you to join. Even if you cannot walk with us, your name will be added to a list of people who are walking with us by financial support. For those who have already donated - thank you, again!!!!!!

Happiness is . . .

learning to love the beach for the first time. =0)

Isaiah used to hate the beach - it was a sensory overload for him. However, this time, he found joy in chasing the waves.

Light it Up Blue for Autism Awareness

Light it Up Blue - April 2, 2012

www.lightitupblue.org

Okay, well, since it's late, this will be a very brief post. =0) In addition to lighting it up blue (as in lighting up the outside of our house blue for Autism awareness) I will also be walking on April 21st for Autism Speaks. It was an awesome experience last year and I am excited to attend again this year - hopefully, this time, with Isaiah (weather/outside temperature permitting). If you are interested in walking with me (you can join our team), contact me and I will give you more information. You can also support me as a walker - by clicking here: Team Super Nova. If you have trouble clicking on the link, just copy & paste/type in this address:

www.walknowforautismspeaks.org/tampabay/superisaiah

If you receive my posts via e-mail, and you happen to lose this post . . . no worries - I will have link on my page as well. =0)

=0) "Super Nova"

Wow, it has been a long time!

It's not that I haven't had anything to post about, it's just that I haven't had much time to sit down and actually write a post. :0}

Since October, Isaiah continued to have some form of a reaction on an almost weekly basis (sometimes less than a week would pass before another reaction). Each of these reactions

involved vomiting as well as fatigue, flushing, itching, leg pain, headaches, slurred speech . . . it wasn't fun and Zofran became one of our closest friends (as well as one of those putrid, pink hospital pans that Isaiah carried around with him). He even had one of these episodes on Thanksgiving Day.

On December 5th, we had another appointment with All Children's AIR clinic. We found out that the results were elevated - his urine histamine levels, as well as his norepinephrine and a few others. All of these were being looked at to try and determine if Isaiah has a tumor on one of his adrenaline glands (located on his kidneys). This type of tumor can exist for years before it's found. Since Isaiah's levels were

elevated, but not quite high enough to indicate the presence of this tumor, we had to repeat the test. This means more blood work and more convincing my son that peeing in a special cup/bottle is okay . . . as well as convincing him that it is okay to store that big, nasty bottle in the refrigerator (because cups and bottles are for drinking and pee doesn't go in them or the refrigerator). :0)

In addition to repeating the testing, the team of doctors decided to increase Isaiah's Zyrtec and Atarax - both are to be taken three times a day. His Flonase was also increased to an adult dosage to help him with his nasal issues. Of course, all of this means that we have to return to ACH's AIR clinic every six weeks for a while - except for the next appointment where we would go over the test results . . . that would be in January.

The increase in meds seemed to do the trick - he didn't have weekly reactions for a while until a week before Christmas and then another really bad episode the day before New Year's Eve (which required a trip to the ER). Thankfully, we had a reaction-free Christmas and enjoyed spending time with my cousin, Nancy.

When we returned to ACH in January, the doctors were still concerned that Isaiah's counts were still high - in fact, they had increased. STILL, they are not high enough to say that he has this tumor . . . which was now given a name - a pheochromocytoma. They took his results to endoc

rinology (literally a few steps down the hall from the room we were in - they share the same floor) to get an opinion. Endocrinology said that we didn't have to make an appointment with them yet, but they will follow his case in the event that further testing (scans) would be needed. At this time, the test will not be repeated, we will wait to see if things improve or worsen.

Our next scheduled appointment??? February. :0}

Somewhere in all of this, Isaiah had an appointment with neurology, had an ENG and nerve conduction testing that determined that Isaiah has peripheral polyneuropathy. What does that mean? Well, we still don't know, bu

t it explains the pain in Isaiah's legs and we were told it is more than likely progressive . . . and may explain Isaiah's hypertonia (over-toned muscles) in his legs and hypotonia (under-toned muscles) in his upper body. Isaiah is no longer considered to have cerebral palsy (spastic diplegia) but something else . . . which means more testing because neuropathy is a symptom, not a cause.

I want to say, very quickly, how proud of Isaiah I am. During all this testing (the ENG and nerve conduction testing, especially), Isaiah has not once cried or thrown a fit. The ENG and nerve testing are painful - even adult manly-men complain about how painful it is (one test involves long needles inserted into your muscles . . . both tests include electrical currents running between two needles/pads). The last bout of blood testing involved 8 tubes of blood being taken and one test being repeated. Isaiah is my hero.

A few weeks ago, Isaiah had another reaction. This one was different and was . . . well, puzzling. Isaiah became really aggressive - really aggressive. The words coming out of his mouth made no sense whatsoever and he was screaming. It wasn't just one meltdown (??? - I don't know what to call it), but two less than 5 minutes apart from one another and lasting about 20 to 30 minutes each (I have no idea how long I was holding him, but I was beyond exhausted when it was over). After Benadryl and other meds were given, he calmed down and acted like absolutely nothing had happened.

The next day, Isaiah was completely flushed - head to toe - and breaking out in rashes . . . then petechiae . . . then bruises. I have never seen anyone break out in bruises before. It was one of the weirdest things I think I have ever seen . . . and quite scary.

Again, meds were given and Isaiah took a nap. I did notify Isaiah's doctors, complete with pictures (one of Isaiah's doctors received the e-mail and called while on vacation in Vietnam . . . AWESOME doctors). No emergency appointment was necessary since we had an appointment just a few weeks away.

Now, on to yesterday's appointment . . . The neurology labs aren't back yet, so that wasn't discussed (did I mention that one of these labs costs $18,000?!? and it's not accepted by insurance . . . yeah, I'm still working on getting that one covered), but the neuropathy was discussed. We talked a little more about the strange episode a few weeks before and it was decided that we did not need any further testing at this point - Isaiah has had tests to look at clotting issues in the past, and nothing unusual showed up. However, Isaiah's meds were increased . . . again. Instead of Zyrtec, Isaiah was switched back to Xyzal (YAY!!!!) and now takes the adult dose 4 times a day. His Atarax dosage was also increased. We were told that if this does not work, we are looking at something far more serious for Isaiah. What that is, I don't know . . . I didn't ask. More aggressive treatment??? Maybe. A new diagnosis? Probably. It's just too much to think about at this point . . . I just want to at least get through these next six weeks before I think about

all of that.

By our next appointment with the AIR Clinic, Isaiah's neuro labs should be back . . . except for maybe the $18,000 one (it depends on insurance and the doctor's suggestions). And, yes, you are reading that correctly (no, it's not a typo) . . . the test costs $18,000 and my insurance considers it to be experimental and they won't cover it. The lab (which is in Georgia and the ONLY lab in the US that runs this test) does not accept Isaiah's secondary insurance. Whatever happens, hopefully, we will find some answers to explain the medical mystery of my son. These tests are not going to mean easy answers, but at least we may have better treatment for his legs/upper body issues that may also explain the odd symptoms we're seeing and reporting to Isaiah's allergists (yes, we know a lot of what is going on is outside of the allergy dept., but they are doing their best to help us get to the right doctors).

Our next appointment is in six weeks . . . I think it's March 29th (I'm so thankful we have the technology of cell phones equipped with calendars . . . calendars that notify us of upcoming appointments). :0) Right now, we are relaxing . . . and Isaiah is happily stimming (self-stimulating - the repetitive movements seen in people with Autism) over his Star Wars Lego video game (hey, he totally needs a break). :0)

I have another post to write about my dad . . . and, yes, it will be before several months have passed. :0}